Topic: symptoms come and go wax and wane , is this normal for lyme?
Maya12
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posted
I am just wondering if this is a normal pattern? I have symptoms on a daily basis but they change. One day wicked head neck pressure blurred vision totally out of it and confusion
The next the same but with anxiety and rage
The next head clearer but ressless legs numbness etc
Is it normal for symptoms to come and go in varying degrees on a daily basis
All of these symptoms and many more are often here in varying degrees but they do switch around in severity
Posts: 1632 | From Canada | Registered: Feb 2012
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gmb
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posted
Maya,
From what I hear from others, and experiencing now more than ever, symptoms can change frequently in occurance and severity.
I'm just finishing my 2nd year in treatment; and on my second LLMD. Currently on IV Rocephin, oral zith, and mepron paint.
My current set of mostly neuro symtpoms change and rotate often. This week I've noticed frequent changes thru the day like, sore knees and weak muscles in am, cold hands and tingling feet mid-day, and sinus headache and burning feet in evenings. Did I forget to say foggy head all day?
Today is 60 deg F and my hand is so cold right now that I can barely type.
Keep a daily log listing all of your most frequent symptoms and gauge severity of each on a scale from 0 to 5.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, that is classic lyme.
That's what makes spouse, family and friends start to think that you may be a hypochodriac. You are always complaining about different things.
Most people don't know any disease that can cause this. The answer is lyme disease.
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Maya12
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I agree tf I am so excited to start on treatments it sounds like there are so many facets to this disease ie parasites, candida, lyme and co, metals I really wish someone could tell me what parasites to look for and how to treat them. I just hope the llmd I am going to see knows of all these things and how to treat them or test for them. I already know I have heavy metals and candida, suspect lyme very strongly and likely knowing my luck have parasites too
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Maya12
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Funny thing too for the first 3 to 4 days on the clarithromycin I felt horrible and now for about 2 days I have felt slightly better don't know if this is another indication of lyme. Don't feel normal just slightly better
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steve1906
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Dido-----fatigue, headache, muscle aches, severe and painful neuropathy (nerve pain) stabbing, burning, shooting pains, to mental illness etc... - and countless other symptoms.
You'll never know which symptoms you're going suffer with from day to day....Lyme Sucks!!!
Hang in there....
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
This is how I experience Lyme as well, and what has kept me from pursuing treatment further, until now. I kept thinking that if it is better some days, maybe it is part of a larger trend for the better. It's easy to trust the doctors that tell you it's just inflammation and it will go away. You want to believe it too.
But time has told that is not the case. It is just Lyme. It is cyclical. That's how it operates, I think in conjunction with activity level, the food you eat, what you drink and how much, and certainly medications. It's a lot for one body to handle.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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Maya12
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But is anyone actually getting better? I know that you have tf which gives me hope. How come though for some it can take so long? Is it an uninformed doctor not doing the right treatments ? Why does it take some so long to recover?
Posts: 1632 | From Canada | Registered: Feb 2012
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posted
It's different for everyone. How long they've had it, co-infections, the right LLMD, how well your body responds to meds...etc
You will get better.
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steve1906
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Maya12, It depends on the individual and how the Lyme bacteria is behaving in the system � and how Lyme you have been sick.
Everyone's immune system is different. If one has a strong immune system, then he/she may recover faster. If the bacteria has entered your central nervous system �(like me)�, it will more than likely take very long before feeling better, in a lot of cases, if not most; years.
This disease is frustrating, devastating and very painful; most people need the help of a good LLMD to help them with the proper treatment.
Also, many of us with Lyme disease also have co-infections. One can have many of the same symptoms as Lyme but, they don't all respond to the same antibiotics. It takes a myriad of antibiotics to get rid of these organisms, that�s the reason you need a (LLMD).
(Is anyone actually getting better?) � Yes, people do recover from Lyme, some faster than others. But to be honest, for reason some don�t recover, we�ll never know why some don�t. It could be for many reasons � (Not treating correctly � Not following the protocol ETC�)
Take one step at a time, try not to get stressed out � Believe it or not, stress will make all your symptoms worse; and delay your recovery.
I�ve always believed, the first and number one thing we all need to do is (rebuild our immune systems). Lyme disease destroys our immune systems; and we have to keep it strong for the rest of our life�s!
You found the right place for help with these diseases, keep reading and asking questions, you can beat this!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Maya12
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But why would some just never get better is it because they don't investigate enough? Ie treat heavy metals, candida , parasites , find out about gene mutations and so many other things I have seen on here
I don't understand why you couldn't get better if you were treating for all of theese
Does it come down to money Or is it also the length of time you have had the disease combined with proper treatment and lack of money
I just want to learn as much as I can to target all aspects of this disease head on
I also have an aunt who was diagnosed with chronic lyme for over 20 years, she has treated candida and the lyme and now metals and she is so much better
For those who don't get better do they get at least somewhat better or do they just stay as sick as they were before treatment
I really hope I have a good llmd
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Maya12
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Anyone have any idea why some don't get better?
Also what causes biofilms ? Is it only the fry bug?
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lyme in Putnam
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Before my salt dropped, had my personality back, feeling of self, today derealization gone, depersonalization 100%, I don't think the same 2 days in a row. Muscle killing me yesterday behind neck, today not as bad and Mind off again. I hate this.one day at a time.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
I am searching for answers just like you. There seem to be so many layers to getting well. Everytime I post I learn so much but I also get totally confused. There seem to e so many reasons that we don't respond...not to mention how long it took to actually get diagnosed.
Keep coming here. There are very knowledgeable folks here. Although I find it hard to believe someone you have any brain fog ..you just seem too smart to me.
Me though? I have a PhD but couldn't think my way out of kindergarten at the moment.
Take care
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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Maya12
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Hopw come it takes so long to erradicate lyme if it has entered your nervous system? I am sure it has entered my nervous system do you at least feel a bit better over time after starting treatment?
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Maya12
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Lol thanks pme no I am not that smart just have been sick like this for 2 years now. I am going to see an llmd in may and am just trying to gather as much info as I can from what others have mentioned
The more I read the more I realize this is a syndrome so to speak with so many facets or layers that do need to be treated but arise from the initial lyme infection
Seems that lyme and co, candida, metals, parasites and gene mutations are all interrelated The question is why ? Does the gene mutation not allow the lyme bacteria to be properly fought off by the immune system which then opens the doors to a poor immune system and all the other assults on it This is a retorical question of course but I am trying to learn and jot down everything I can to consider in the future if just lyme treatment doesn't help
Are there those that don't even benifit from proper treatment at all? Or do they at least get a bit better but just need to keep digging deeper?
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Maya12
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Can anyone answer this questions , just want to know that I can get better if I dig deep enough
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It is a great series of questions. I would love to know the answers too but I have a feeling it's like the chicken and the egg. You just have to pray you find the dr with the right focus and approach.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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steve1906
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( just want to know that I can get better if I dig deep enough ) - I tried to ans. that question above in an earlier post.
The true ans. is (NO ONE CAN TELL YOU FOR SURE).
Q: If there is no cure what is the prognosis?
A: There are many factors to answering this question. It depends on how long you have had LD, if co-infections are involved, viral co-infections and a host of other factors. Some LD patients compare it to cancer and there are similarities. LD and the co-infections can possibly kill (if left untreated for years) the treatments can be prolonged and excruciating. You hope for an eventual state of remission. . There is no test available to show that once treatment is over that you are "Lyme free". If you have an educated Lyme Literate MD, most LD patient will remain on antibiotics until they are symptom free + 2 additional months beyond that.
It can take time, time and more time to get well, especially if you have been infected for a long time and have other complicating factors mentioned above. An LLMD once said, "LD treatment is not a race, but a marathon". Sometimes, when taken off antibiotics LD patients can relapse and symptoms can return quickly or years later and maintenance antibiotics in some cases are necessary.
read this site below: Maybe it can help explan things a little better.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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nefferdun
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I thought it was one thing and then another. Lyme is all over the place. So confusing.
Yes, keep digging.
We have been digging for a long time before you and everything we have found you will get too. We just keep digging away until we uncover the answers. Keep the faith.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TF
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Member # 14183
posted
The doc is the key to getting rid of this disease. Can't emphasize that enough. That is what I learned in the 10 years I have been around this disease.
This is an extremely complex disease. So, to have the best chance of getting well, you want to get to a real expert.
You can start out with a lesser lyme doc and see if they can do it for you, but if they can't, then it is time to get to one of the top notch lyme doctors in the country.
Not everybody can afford to do that. So, many say that lyme is a rich man's disease.
Many doctors treat lyme, but only a few know enough to get rid of it for a person. Your job is to find one of the few. You want a doctor who has gotten rid of lyme for at least 3 people that you know of personally.
What "personally" means is that you have verified with someone other than the doctor that they are well.
With this disease, it takes money to get real expertise. And, many have to go out of state for good treatment.
If you are not getting well with the doctor you currently are seeing, you must be willing to change doctors. I know it can be traumatic.
I decided to change doctors and it was the best decision I ever made health-wise. My second lyme doctor told me one day that it looked like I was just going to have to stay on meds the rest of my life. That I was one of those people who could not get rid of lyme. Baloney!
I knew this guy wasn't following Burrascano's protocol. So, I called other lyme support groups and asked for a doc who would do EVERYTHING Burrascano had in his Guidelines, and I enumerated them. That's how I found my final lyme doctor who got me well.
It only took 13 months under his treatment and it was all over. The last 5 months, I was symptom free.
So, read my post under "Quick Links to Popular Topics" called something like "What Makes a Lyme Doctor Top Notch" and you will see the difference between the "men" and the "boys" when it comes to lyme treatment.
STUDY the Burrascano Guidelines. Practically memorize them. This is how you can learn about the disease and evaluate your doctor's treatment of you.
My final word of advice is to seek out the top notch doctor while you still have resources. Once this disease has gone on and on and causes you to lose your job, you will be a lot less likely to be able to afford good care.
I have seen folks lose their jobs, their health insurance, their house, their savings, their credit cards, their friends, spouse, etc. to this disease.
And once you lose your brain, it is very difficult to learn and help yourself find good care.
So, get the best treatment quickly. It's easier to treat earlier and you have a lot more options earlier.
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Maya12
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Hey tf so do you think it is a good option to stay with the doc that I have mentioned to you that I will be seeing. So far have heard lots of good stuff about this doc. Apparently this doc treats agressivly
Posts: 1632 | From Canada | Registered: Feb 2012
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posted
For someone in the middle of treatment with lots of questions this is a really useful thread with some really useful comments. Thanks
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Maya12
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Glad this thread is helping
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TF
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posted
Maya, you have to STUDY the Burrascano Guidelines, then evaluate the doctor's lyme knowledge and treatment of you compared to the Guidelines.
If her treatment doesn't line up, then you should seriously consider going elsewhere.
If you improve under her treatment, then fine. If you stop improving and the doctor can't get you improving again (called "plateauing"), then it may be time to move on.
Any time you begin to feel like the doctor is at a loss regarding your case, or any time you feel like you know more than the doctor, it is time to reconsider changing doctors.
So, considering changing doctors is something you may do throughout lyme treatment.
If you ever feel you need to change doctors, don't leave one until you have had at least one appointment with the new doctor. This way, you know you like the new one or you don't.
Don't go without medications either. Stay on them continuously. That is another reason not to quit a doctor until you have seen a new one. So, that is how you have to change doctors.
If you don't want to be concerned about all of this, then just go to the best doctor in the country right off the bat. That generally takes care of the problem of a doc who doesn't know enough to get you well.
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