Just have been wondering about whether chronic lyme is much different if you went undiagnosed a few months vs. a year or more?
From what I understand if you catch lyme right away you can often treat for a month or so and can be in the clear. I know many people who either saw a tick or the rash, took antibiotics for about a month (usually doxy) and have been fine.
I realize there are exceptions though but many people I know have been OK w/ short term treatment.
I am guessing I had lyme/bart anywhere from 3-5 months before getting diagnosed and starting treatment.
I know that is enough time for this disease to cause havoc but before I started treatment I actually felt OK. I had some fatigue a couple months before (when I also had a miscarriage which I think may be related to lyme but hard to know if the fatigue was due to pregnancy/miscarriage or lyme).
I felt OK enough during my first month and a half of treatment to continue exercise.
I am now feeling more fatigue that I feel is related to my long term use of abx (I know 3 months is not long for many, but I have never been on abx for more than a week or so and rarely have had to be on them).
Just wondering what my long term prognosis might be. Am I in the same boat as someone who has gone undiagnosed for years because of how much it spreads in a couple months time or because I caught it on the earlier side may not have to fight it as long?
My bart test showed that it is stabilizing and I am continuing on meds for at least the next 5 weeks.
I want to work on strengthening my immune system but worry that the long term abx are going to cause me some lasting issues that I didn't have before treatment.
I am waiting for some test results but would like to think about discontinuing abx in the next couple of months--besides fatigue I don't have a lot of other symptoms. Any thoughts?
Posted by TF (Member # 14183) on :
Burrascano believes that if the illness is present for at least one year, then it has significantly affected your immune system--has compromised or weakened it significantly, in other words.
In fact, in order to say you have chronic lyme, you have to have had lyme at least one year.
See this from page 3:
"Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)."
He also gives the following factors that determine the severity of the illness/length of time to recovery:
"The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery. More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses." (page 4)
your spirochete load (doesn't sound like your load is high, based on how you feel)
the duration of your infection (less than 1 year, which is good)
presence of coinfections (you know you have at least bartonella, so that can add to length of treatment needed)
severe stress (miscarriage? any other stress?)
immunosuppressant medications (have you had steroids of any kind since getting sick or right before getting sick?)
severe intercurrent illnesses (do you have any other illnesses?)
I completed my lyme treatment 6 years ago and I am still symptom free, enjoying my life.
My suggestion is that you treat for at least 2 months past your sympom-free point, which is the Burrascano rule for when to end treatment. (And, fatigue IS a symptom.) When you are symptom free, it means you feel totally normal.
I treated for 5 months past the symptom free point because I became symptom free right before winter. Winter can cause a relapse, so I had to stay on meds all winter.
Nobody at my new job even knew I had had lyme and was still taking lyme meds. It didn't interfere with my work at all, and I was in new jobs every few months, all high stress management positions.
So, don't shoot yourself in the foot by stopping meds too soon and getting sick again. It isn't worth it. It is better to follow the tried and true rules and treat this thing once and be done with it.
If it comes back on you because you stopped meds too soon the first time, then you will be sick (probably pretty sick) when you are back at work. You don't want that.
It sounds like you are against antibiotics and you are blaming the antibiotics for things and believe they will harm you long-term. I don't know what is behind that, but you may want to analyze/rethink your attitude toward antibiotics.
Posted by AnnaOD20 (Member # 29942) on :
Thank you SO much TF! Great info and puts things in perspective. I really appreciate you taking the time to help me process this.
My issue w/ the abx is that I felt better before taking them!
I had the m/c in Sept but by Nov I felt pretty much back to normal. When I got the diagnosis in Dec I was really surprised. I had a couple of fleeting symptoms that may have gotten worse w/out abx (i.e. one day one eye was blurry on and off for a couple of hours) if they were truly a symptom of lyme/bart.
I felt good the first month and a half into treatment. I was exercising regularly, but since adding in Ceftin (taking out doxy) I have been dealing w/ fatigue again (some days worse than others).
I suspect maybe I have yeast issues as a result of the long term abx and worry that I will have other lasting issues from taking them. Just hard to be on abx when before I started them I was OK.
I realize though that I am lucky--maybe I caught it so early that starting the abx headed off symptoms that would have gotten worse. The stress of the m/c was the worse stress of my life.
You are right though about the need to persist w/ treatment. Thank you for the reality check!
Posted by AnnaOD20 (Member # 29942) on :
By the way...besides the m/c and current diagnosis of lyme/bart I had been in good overall health. I hadn't been on any meds prior to this diagnosis in at least 2 or 3 years.
Posted by AnnaOD20 (Member # 29942) on :
One more thing--I guess what I am having a hard time figuring out is if my fatigue is related to the abx and side effects from them rather than the lyme then how will I know when I no longer have symptoms of lyme/bart?
My blood work is showing that the bart is stabilizing, but guess I have to figure out how to be on abx and deal w/ the fatigue if it is not related to lyme/bart. Any ideas?!
Posted by Geet3721 (Member # 15751) on :
Are you supplementing B-12 ? I found that getting B-12 shots helped me with my fatigue. Also I take a prescription B12 supplement called metanx because I have a mutated gene and its hard for my body to absorb the B12. I had this tested by my naturopathic doc.
More people have it then you realize it might be worth checking out !
Feel better
Posted by TF (Member # 14183) on :
You are most likely fatigued because the Ceftin is killing a lot of lyme germs. Each medication has a different killing profile (meaning can kill different germs). So when you are put on a new medication and it is killing germs, you get fatigued.
When you are no longer fatigued by the Ceftin, it is no longer working for you and it will be time to change meds again. That is how lyme is treated. This is VERY IMPORTANT for you to understand.
With every med change, this can happen. When finally no med makes you fatigued, you are finished treating!!!! There are no more germs to kill !!
You can try drinking lots of water with fresh lemons squeezed into it. This will help detoxify your body from the dead germs it is trying to get rid of. It may help with the fatigue. My doctor told me to do this and it worked pretty well for me. The water and lemons cleanse the body.
So, just remember that the antibiotics are not causing the fatigue. It is the killing of germs that is making you fatigued.
Give a healthy person an antibiotic and they will not become fatigued.
At the end of my lyme treatment, my doctor restored my gut for 30 days, so I did not have any yeast issues from 3 years of continuously taking high-dose antibiotics.
He did this by having me take nystatin, diflucan, and Florestor. So, stop worrying about yeast issues as a lasting effect of meds.
What other thing do you fear that abx will cause?
I am totally normal. My gut is normal. I have no permanent side effects from antibiotics. State your fear and see if the facts back it up.
Remember, your reaction to these antibiotics show that you are NOT healthy right now. Let these germs alone and they WILL multiply over time and eventually you will be severely ill. That is something to fear.
Posted by texanmom3 (Member # 28840) on :
my son was bit this summer, started doxy within 30 days and after meeting with an LLMD, feels that a previous tick bite in my son's childhood came before this current bite. My son is responding like a chronic patient. His fatigue is severe. He has been on ABX for Lyme and Bart since last fall. The LLMD is taking him off ABX for 3 weeks to detox him and then get back on them. This should help with the fatigue as the LLMD believes that there is a toxin build up that needs to be dealt with. The herb Eleuthero in a tincture form helps a little bit with the CFS we are finding, but not anything significant
Posted by AnnaOD20 (Member # 29942) on :
Thank you again. TF--all you said makes sense.
I just got off the phone w/ one of the LLNP's in my practice. She told my parasite stool analysis shows some imbalance, fungal growth/yeast and some bacteria.
I also tested positive for mycoplasma (sp?) although I quickly looked up the symptoms and don't have any of them.
My CD57 went from a 48 to a 60 and now is an 80. My babesia results are still pending.
I am going to try and get my appt moved up so that I can address these issues. I realize I have to go on a yeast free diet and address these other issues.
I am overwhelmed. I am going to see if I can get the naturopath to sit in. I haven't met him before but really feel like I need some additional help in figuring out how to address all of this.
I had a feeling that I had something else going on in my system. I just wonder if there are other things that I am missing...if I have tested for everything that I should?
Posted by TF (Member # 14183) on :
Per Burrascano, many people have been exposed to mycoplasma, so they test postive for it. That doesn't mean they have it.
See this quote:
"Frequent exposures to Mycoplasmas are common, resulting in a high prevalence of seropositivity, so the best way to confirm active infection is by PCR." (page 5)
So, you may want to ask for a mycoplasma PCR test to confirm that you actually have myco.
While treating lyme, you must be on a yeast control diet. This is an absolute necessity or you will get yeast! See the Burrascano Guidelines for what you are not allowed to eat. It starts on page 34.
Nothing made from flour--no bread, pasta, cake, cereal, crackers, etc.
No sugar
No fruit because it contains sugar (except for lemons and limes)
No potatoes, no rice (They turn into sugar quickly)
So, basically all you can eat is meat and non-starchy vegetables. For breakfast, try quoina flake porridge. Recipe is here:
You buy the quoina flakes and stevia at a health food store. Buy a good refrigerated probiotic there also. Take the probiotics at least 2 hours after antibiotics. Take them at least twice per day. They will help maintain a healthy gut.
If you have not been told these things, then it is esssential that you get your education from the Burrascano Guidelines.
Read and study them.
This is what we all have to go through. At first, we just sit back and wait for the magic to happen. Then, as we realize how involved this disease is, we start to educate ourselves and take things more seriously.
You play a major role in getting well from this disease. As you will read in Burrascano, no smoking and no drinking alcohol. No sleep deprivation either. Any of these will cause treatment failure.
It is overwhelming in the beginning, but really your doctor should have told you about the yeast control diet at the time he/she put you on antibiotics, and the other rules re. smoking and drinking.
Maybe these things were said but you weren't totally tuned in to how important they were. My lyme doc emphasized these things to me. I got yeast infections any time I broke the yeast control diet. You can't even eat a bite of a brownie! I thought I could because I followed the diet strictly for 2 weeks! Ha!
Yeast feeds on sugar, so as long as you are treating lyme and coinfections with antibiotics, you must deny it any food. You must eat like a strict diabetic, basically.
Also, were you tested for ehrlichia? What lab did your tests? I hope it was Igenex (in California) because they are the best.
If you are with a good lyme doctor, all of this is done automatically. If you are having to ask for these tests, you may need to rethink the doctor you have chosen.
Many doctors treat lyme disease, but only a few know enough to get rid of it for a person. So, find out if your doc is considered top notch.
The Burrascano protocol is what got me and all of my friends well. It consists of 4 parts:
antibiotics supplements diet weightlifting/calesthenics every other day for 1 continuous hour
All 4 parts are essential. Just taking meds will NOT get a person well.
Please study the Guidelines and begin doing everything that Burrascano says. Take the required supplements, etc. To boost your immune system, you need the supplements and the exercise.
"Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission." (page 31)
You may have to work your way up to the 1 hour routine. Do a full body workout. You will regain your health by doing all that Burrascano says to do. He is the lyme disease pioneer and probably the most successful lyme doctor on the planet. They came from all over the world to see him.
Take your time and learn about the disease that you have. It is highly complex.
Posted by AnnaOD20 (Member # 29942) on :
TF--you are a true god send! Thank you for organizing all of this info for me and taking the time to check back and continue to offer support.
I am going shopping tonight for a yeast free diet. My LLNP did mention it to me but I didn't pay close attention at the time unfortunately. I have been alcohol free since day 1 of meds and am not a smoker.
I know I have to focus on diet. I had been exercising regularly in the beginning but now do pilates or yoga a couple of times a week. I am going to start the weight lifting piece more consistently.
It feels good to know those are things I can do on my own.
The practice I go to is an integrative one in upstate NY. They treat a lot of lyme patients (I met a couple in the waiting room at my last appt). Besides this practice there are only ID's in my area who are not aggressive (from what I hear). From the start this practice put me on 3 antibiotics, probiotics and other supplements.
Dr. H is probably about an hour away and as much as I'd love to see him it will be very tough for me to get there for appts w/ two young children. He also doesn't take insurance as many LLMD's do not. I am spending a small fortune (as many of you can relate) as it is and not sure I can afford to see him as well as trying to arrange/pay for child care.
The practice that I am going to immediately suggested the Igenex testing (which is how I got the lyme/bart diagnosis). I did have to ask about testing for babesia and ehrlichia. I am not sure why that was not done at the time of the other testing (I remember the dr. I saw saying he would check off for coinfections).
I asked the LLNP about those other coinfections (not sure why bart was tested but the others weren't) so I was tested at a local med center that isn't the same quality as Igenex but better than lab corp (i.e. bart showed up positive on the med center's testing but was negative at lab corp).
I find that she is receptive to testing everything I ask for (i.e. heavy metals, parasties, other viruses/co infections, adrenal functioning).
I have to be very proactive though in asking for the results (i.e. today I called back and asked if they would contact the lab to find out about when my babesia test results are in). The other nurse I spoke to didn't mention my adrenal functioning test and I forgot to ask.
My LLNP will review some of my test results but I find I have to ask her about other tests she doesn't bring up that I had done.
I also have to call the practice to find out about test results (i.e. when they aren't in on time for my appt) rather than rely on them to initiate that contact. Is this typical? I have never been followed in multiple appts for any other thing in my life (except for pregnancy) so not sure if this is to be expected when dealing w/ a more chronic condition?
I am going to look at Dr. B's guidelines more closely (have referred to them quite a bit but need to look more closely).
Thank you again!!!
Posted by Lymetoo (Member # 743) on :
I can personally recommend kefir as a great probiotic...my digestion improved immensely after starting to take it...I take it with every meal.
Posted by migs (Member # 16496) on :
quote:Originally posted by texanmom3: my son was bit this summer, started doxy within 30 days and after meeting with an LLMD, feels that a previous tick bite in my son's childhood came before this current bite. My son is responding like a chronic patient. His fatigue is severe. He has been on ABX for Lyme and Bart since last fall. The LLMD is taking him off ABX for 3 weeks to detox him and then get back on them. This should help with the fatigue as the LLMD believes that there is a toxin build up that needs to be dealt with. The herb Eleuthero in a tincture form helps a little bit with the CFS we are finding, but not anything significant
Your son is not atypical. I have spoken to two "name" LLMDs about this exact topic. I got hit very strongly by fatigue and facial palsy only 2.5 weeks after my tick attachment, and was on antibiotics in less than three weeks but have been treating and relapsing for almost 3 years now.
The first doc put it the best. He said "It doesn't matter how long ago the tick got you or your rash showed up. It only matters if your infection has remained localized to your lesion or has gone systemic. Once the bacteria has left the rash site and your body is septic, you are in trouble."
He said as soon as I lost my thought clarity and the fatigue hit, it was already too late for the 30 day cure.
All of the studies that say Lyme is often cured when caught early and people who say they had Lyme Disease but were fine after a month of antibiotics, are all patients that treated after tick bites or when they saw a rash. They didn't really have a disease yet...never had the bacteria disseminate throughout the body.
It was explained that once the bacteria spreads, be it for a couple days or couple years, you will be what is called "chronic". He also said "chronic" is the term but not totally accurate as really it just means Lyme that isn't yet fully treated and eradicated.
This was an interesting discussion. Imagine a urinary tract infection, sinus infection, or strep throat. Now think of how quickly you feel better once you start your antibiotic...one day or two...but you take the antibiotics for another week to make sure it is gone and won't bounce back. If you took one dose or one day of that antibiotic, you would feel much better the next day but your infection would quickly come back, as it wasn't treated thoroughly...do this again...you would have a chronic UTI or chronic sunus infection. NOW, Apply this to Lyme...a bacteria that replicates extremely slowly and is killed very slowly, as much of it is in low blood flow/low oxygen areas and only gets minimal exposure to the antibiotics. If you are septic with Lyme bacteria, it might take many months of antibiotics to feel symptom free, and then you want to treat many times that length if you want to be sure it is really gone.
That is why some name LLMDs have great cure rates, but only if they can get the patient to stay on treatment for extended periods of time.
Sorry for long post but your son is curable and doesn't have to be "chronic" forever.
Posted by BackinStOlaf (Member # 23725) on :
Migs what a great post and analogy
Posted by daniel (Member # 22201) on :
hey,
i have lyme and barts too, but in my case, i felt sick very quick, after i had a strange intensive panic attack i went to bed.. in the next morning i was foggy.. that is 2 1/2 years ago. the fogginess and the psych symptoms increased by each month... i was suicidal before treatment because nobody could help me.. then finally.. diagnosed with lyme.. im taking abx since 2 years.. im improved a lot, this week i felt good, i was at work, 40 hours this week, at some moments i had to close my eyes and relax 5 minutes.. but it is ok. i still have brainfog which is disturbing and im still taking meds. last year i took 1/2 year ABx against bartonella.. like levaquin, rifampicin, bactrim and others.. the titer went down somewhat, but i am still positive for barts. even my borrelia titer is falling down.. my immunesystem seems to work well because i have a good cd57.. i believe that the immunsystem just cant reach some areas in your body well.. for example the brain, it is protected by the blood brain barrier.. when its broke down, the bug can enter your brain.. the question is, how good your immunsystem can pentrate your brain.
long speech.. what i want to say is:
treat your bartonella/borrelia intensive.. dont worry about your fatigue, believe me, brainfog is 10000 times more worse than some fatigue. in my case.. this "combination" hit my brain.. so take care of your self and do everything to protect your brain, this includes some long term abx