posted
Hello, Please feel free to give me any input. I am new to this disease and trying to learn as much as I can.
I feel pretty good most days except for mild head aches, muscle twitching in my legs arms & face, & body aches some of the time. Sometimes I also have chest pain/ aches. I went through a lot of testing before I was diagnosed w/ Lyme. I have had 2 stress test one was nuclear, mri on my brain, tons of blood work. I was told I had a muscle disease due to elevate muscle enzymes & also that I was crazy. Muscle twitching is what kept me going back to the doctors. I just couldn't understand why my muscles kept twitching. My doctors told me that this was normal, but I knew it was not. I finally asked my doctor to test me for lyme & it came back positive.
I was Diagnosed w/ Lyme in October 2012. My 1st test came back present with bands: igm p41 & igm p23. My pcp put me on 100mg doxy for 21 days, but i felt like he didn't know anything about this disease, so I started seeing my llmd in November 2012. She has me on: -Doxy 200mg twice a day -Azithromycin 250mg twice a day -Tindamax 500mg twice a day/ only 2 days a week
I am also on a lot of supplements: magnesium, coq10, probiotics, aplha-lipoic acid, zinc, vitamin c, b-12, dhea, & milk thistle. The magnesium has helped with my twitching, but it is still there...just not as bad.
I have another appt with my llmd in about a month. I have done good on my medicine so far. No real issues except I get a lil nautious in the mornings if I don't eat.
I have a couple of questions- 1. How long should I stay on these abx? 2. How long will I need to take these supplements? 3. Does anyone ever get rid of the symptoms? 4. I have high blood pressure. I feel this is due to lyme. Will this ever get back to normal? 5. Is there any other meds or anything else I should discuss w/ my llmd? 6. My 2nd lyme test came back negative. Only bands igg p41 & igm p23 came back positive. Is it possible I don't have lyme? Maybe something else going on with me? 7. I have had trouble losing weight. Actually gained about 10lbs over last couple of months even with regular exercise. Is there anything you can recommend that may help with weight loss?
Thank you for taking the time to read my post & please feel free to respond with any input.
Posts: 10 | From Jacksonville, NC | Registered: Oct 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Stay on these or other antibiotics until you have had no symptoms for at least two months.
Some people do get rid of symptoms. The most successful catch it early. How long have you had symptoms? They don't always show up immediately however.
Testing is not perfect, but if you had a positive IgM and lyme symptoms, you have it.
Yes, high blood pressure can be related, also weight gain.
How much magnesium are you taking?
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I have had muscle twicthing for about 7-8 months before positive test. Had head aches a little longer as well as some random pains in arms & legs. I take 250mg of magnesium taurate twice a day, I think I am going to up that by another 250mg. I had tick bite in Feb of 2012 & symptoms after that, but some symptoms I had before tick bite. So i am not sure if I had it before my feb. tick bite. My llmd thinks I may of had it longer.
Posts: 10 | From Jacksonville, NC | Registered: Oct 2012
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posted
I was on various oral antibiotics for 7 months in 2010 felt pretty good so stopped taking them. 2011 was okay but went down hill after surgery, death of my parents in 2012.
Symptoms can back and worse, now have it in my brain, more joints, and am on IV antibiotics. First time just treated me for Lyme, this time added meds for other TBD.
Posts: 120 | From MA | Registered: May 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I got rid of lyme, babesiosis and bartonella almost 8 years ago now. I have been symptom-free for a little over 8 years.
I praise God for this every day!
The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough. You need a doctor who has enough expertise to cure you!
You must stay on meds until you are symptom-free. Then, you stay on them at least 2 more months. That is the Burrascano protocol. It got me and at least 3-4 of my friends well.
You have to have patience with this disease. Expect to treat at least a year if you have had it at least a year.
The best document you can read to get your education on this disease is the Burrascano Lyme Treatment Guidelines found here:
If you read and STUDY this document, it will answer nearly all of your questions.
He has a whole section on supplements. You should really study that section. You take the necessary supplements as long as you are treating these diseases.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, that is really great that you were able to beat the disease. May I ask what type abx/ treatment you were on? Did you take oral abx? what supplememnts worked for u?
Posts: 10 | From Jacksonville, NC | Registered: Oct 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Briano - Just a thought. You may want to switch your magnesium source to magnesium citrate. The citrate is said to be assimilated more readily.
Whenever I get muscle cramps or eye flutters, I will nibble on a 400 mg tab, and take sips of water, until the spasms stop. Usually, I will only get half-way through a 400 mg pill. A large bottle (120 caps) costs about $12 at Whole Foods Market.
Good luck!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I was wondering the same thing.. Had bad symptoms for over 12 yrs dx 3 yrs ago been on oral abx / supplements still on a roller coaster.. I am 70 and not sure if I will ever see health again
Posts: 1058 | From VA | Registered: Oct 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I got well with oral antibiotics only. My doc used the meds Burrascano recommends (unless I was allergic to them) and at the doses he recommends, and he used the combinations of meds that Burrascano says are required.
I also did the anti-yeast diet, took various supplements Burrascano recommends, and did the exercise Burrascano says is required--one continous hour of weight lifting every other day, a full body workout. (No aerobics.)
All 4 are necessary for success: antibiotics, supplements, diet, and exercise.
So, study Burrascano and take it to heart.
My meds are not the key to success, but this is what they were:
for lyme--amoxicillin with probinecid, then added flagyl
for bartonella--levaquin
for babesiosis--Bactrim DS and pulsed artemesinin (only because I could not take Mepron/zith due to allergy to zith and all of its substitutes)
So, that is why I say to follow the Burrascano protocol. My doc just did what it said and so did I. It worked for me and a number of my friends.
For detox, all I drank all day, every day, was water with fresh lemons squeezed into it. I drank lots and lots of this.
The dosages HAVE to be high like Burrascano says. And, you can't be on just one med at a time. You need combos. All I can say is to STUDY Burrascano and get treatment that lines up with everything the Burrascano Guidelines says to do.
The Burrascano protocol is the most successful protocol in the world. If it doesn't work for you, then you have to start looking at other things like parasites, inability to detoxify, heavy metals, mold, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
The people I know who were not diagnosed within 2 yrs of infection have not been cured , even with great "LLMD"s andlots of drugs . No one likes to say it , but at the present time the cure rate for those not diagnosed early is not very good . We can always hope and pray for improvements in treatment , and do our best to improve with what we have to work with now.
I believe there is a book aout lyme called "Cure Unknown" - that says it all .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I went undiagnosed for at least 10 years, but I got rid of lyme!
My friends who are cured all had lyme over 2 years before getting to a good lyme doctor. One had lyme her entire life--50 years. She still got rid of it.
The doc is the key. That is what I have seen over and over. If I had stuck with my first or second lyme doctor, I would have never gotten well. My second doctor told me I was just one of those people who would have to be on meds the rest of my life!
I didn't buy that. I saw that he wasn't testing or treating me for coinfections, wasn't giving me supplements, etc. so I went to a much better lyme doctor and I was finished with treatment in 13 months.
So, the doc is the key. Don't stay with a doctor who is not getting you well. Educate yourself and evaluate the lyme treatment you are being given.
With this disease, you can't just sit back and wait for the magic to happen. Patients who just wait for the doctor to fix them often find that it doesn't happen. The patient has to learn all they can about this complex disease and evaluate the doctor's expertise and treatment of them.
When you determine that the doc's expertise is not sufficient for your case, you have to find yourself a doctor with more expertise.
For those who have never read my post on what makes a top notch doctor, it is here:
Please give a reference for the statement that the cure rate for those not diagnosed early is not very good.
Few are diagnosed early. That is not a problem for a top notch lyme doctor. That's been my experience, being around this disease for at least 10 years.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Your llmd is addressing all 3 forms of lyme as well as putting you on probiotics. She is doing all the right things.. I agree magnesium citrate is the best supplement for muscle twitches. I dont agree wih staying on abx till two months sympom free because abx themselves can cause symptoms. I would not stay on them more than a year and switch to natural alternatives.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
briano-tf is right when she (he?) says the llmd is the key
it souunds like you have a good one...your job is to do what your doc says and be patient. if you are with a good doc...hopping around from doc to doc because you dont think you are getting well fast enough can really mess you up. you were smart to get to a reall llmd when the primary under dosed you and she changed your meds and supps to really good ones-but it will take time
i was undx at least 15 yrs. then 3 yrs high dose orals got me back to work as PE teacher and back to riding and kayaking. i dont believe i will ever be 100% but my life is worth living and with treatment i worked to retirement and raised 4 kids.
it is important to understand that everyone is different-starting from your genes...your health experiences...environmental exposures...types of lyme and co-infections...
this forum is great for getting ideas but the best thing you can do is find an llmd like you have and work with them
if you study burrascanos guiedlines you will probably see your doc is using them...but they will have to be modified for you specifically...work with your doc and give her a year or so to get to know you and your body...
also there is a post at the top of general or medical about success stories...that might help answer your first question
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Briano, you ask... 1. "How long should I stay on these abx?"
It usually takes at least 4 months on each combination of ABX to make a difference, but listen to your LLMD on this.
2. "How long will I need to take these supplements?"
The supplements help our bodies by giving back what the disease and antibiotics are taking away from us while we are healing. Many stay on certain supplements indefinitely because they help so much. Some are able to stop everything when they are well.
4. "I have high blood pressure. I feel this is due to lyme. Will this ever get back to normal"?
Yes. Lyme disease can disrupt your body's 'homeostasis' - causing your BP to be too high or too low. As you fight the disease, you are likely to find your BP returning to normal. But you should follow your MD's recommendations while it is high.
5. "Is there any other meds or anything else I should discuss w/ my llmd?"
I usually keep a list of questions or observations that come up in between visits. I take my list with me to each visit and keep them in a binder so I can look back. Some ask LLMD how long they think they will be on current meds and what the plan is for the next several months.
6. "My 2nd lyme test came back negative. Only bands igg p41 & igm p23 came back positive. Is it possible I don't have lyme? Maybe something else going on with me?"
This change in WB may indicate that treatment is working. Many of us have doubted our lyme diagnoses. There are other tests that may further endorse DX of lyme. One is a low CD57 test. Another is a brain spect scan. Testing positive for other tick born illnesses also supports likelihood of lyme. Perhaps you could ask your LLMD about these.
7. "I have had trouble losing weight. Actually gained about 10lbs over last couple of months even with regular exercise. Is there anything you can recommend that may help with weight loss"?
Unfortunately, weight gain or weight loss is very common with this illness. You may start to lose weight with treatment. As others mentioned, lyme can mess up your thyroid and adrenals. Many with lyme end up trying to change their diets to gluten free and lose weight as a result of this. I started to lose weight when I changed my diet and dropped about 15 lbs. Adding coconut oil to my diet also seemed to help with some weight loss.
It sounds like you have a very good LLMD based on what you have mentioned here. Your ABX combo is covering all 3 forms of the bacteria from the start! And it is amazing that you are able to tolerate. Some people do not herx and are able to get better. Others have terrible herxing and need to adjust their meds to tolerate.
There is much good reading for additional support. **Edited out name of LLMD** Good luck to you! I hope you will keep us posted.
[ 01-03-2013, 01:39 PM: Message edited by: faithful777 ]
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