posted
Ugh I'm reading all these horrific stories and am scared to death!
I was finally diagnosed this week after months of suspicion and almost 2 years of symptoms. I'm not going to go into all the (frustrating and confusing) details of my journey here but I would really appreciate some info, suggestions and ideas of what I should expect these next few weeks, month, years...?
My symptoms are mild compared to what I've been reading. Moderate to severe joint pain, trouble urinating, stiff neck (mild but constant), fingers going numb every night, constant ringing in my right ear.
My LLMD had me on 200mg of Doxcycline every day. She has me set up with 2 months worth and says we'll evaluate my symptoms again in 60 days. According to her I'm going to feel worse (Hex) and that may come and go. I do feel more joint pain than normal and its only been 4 days on the Dox.
What can I expect? What should I focus on? What should I do?
Thanks in advance.
Posts: 10 | From Rockland County, NY | Registered: Jul 2011
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We all share similar stories... trying to find diagnosis. The good thing is, you found this place and an LLMD, even though I think 200mg of Doxy is odd?
This place is full of really intelligent and caring people and is the best resource out there aside from your LLMD.
Things to remember or homework for you... As the antibiotics kill lyme your body needs to get rid of it. This is called Detox.. Please research detox methods this will be your saving grace.
Examples: Infrared saunas, lemon water, epson salt peroxide baths.
Next, the antibiotics kill good stomach flora that allows you to digest foods. This needs to be replaced by a probiotic.
Examples: Ultimate Flora, VSL #3 DS, etc
Most lyme patients have adrenal and thyroid issues, make sure these are tested and supplemented appropriately.
Last, research, research, research... do not assume your LLMD, or any doctor is prefect. Keep track of your symptoms daily and track your progress. Just don't focus on them too much, your mind may play games with you.
Hope this helps! Fuel
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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posted
If your symptoms are mild, then it's possible you managed to avoid any co-infections, which are common with Lyme disease. Co-infections generally make it harder to treat the Lyme, and the more co-infections you have the harder they are all going to be to get rid of. Don't worry about the horror stories, your story is most likely not going to be that bad! =)
I found that the peroxide and epsom salt baths helped relieve my herxheimer reaction right away. Lyme often causes a magnesium deficiency (most people are deficient anyway, but lyme patients especially so) and low magnesium levels can exacerbate pain. You can add some essential oils to the water but I would stay away from anything chemical-y. stick to stuff made with natural ingredients. Most stores have an "organic" section now, this is the place to look.
I also started taking a magnesium supplement, a b complex, and a big dose of vitamin C. Milk thistle is an herbal supplement that helps the liver function more effectively to clear toxins from the body. Definitely get some of this!
I picked up an herbal parasite cleanse called Parastroy. There is some new research that suggests microfilarial worms might play a role in the antibiotic resistance of lyme disease by "farming" spirochetes for food! In theory, the worms could provide protection to the spirochetes, keeping them safe from the immune system and antibiotic therapy. Some people have had treatment failure that has been attributed to parasites, and treating for parasites is probably not a bad idea, anyway. 1 out of 3 people carry parasites and most don't know it (western medicine will tell you that Americans don't have parasitic worms, but that's a big fat lie. Our food supply is contaminated beyond belief, we probably have more worms than any other country in the world just based on the sheer volume of food we consume compared to anyone else).
Anyway, I hope some of that helps =)
Posts: 156 | From Virginia | Registered: May 2011
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posted
Thanks for the info so far. I have my probiotics. I tested low in vitamin D so I picked some up. I know not to have dairy with my doxy and to take the probiotics a few hours after the antibiotics. I have anti-yeast infection pills.
I'll make sure to check on some detox methods. Will look into the Parastroy. When I go back to my LLMD Ill ask her to check my adrenal and thyroid levels.
@ Fuel1212 - you say 200mg of Doxy is "odd." Is there a newer (better) treatment that I should be asking for?
Posts: 10 | From Rockland County, NY | Registered: Jul 2011
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I would personally want 200mg of doxy twice a day.
--moving to Medical Questions--
(General Support is the usual place for us to come together and support each other... but we like newbies to get help and introduce themselves in Medical.)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Hi Antonio, The milk thistle is very important in protecting your liver from the meds. Just take at a seperate time than the meds themselves.
Sounds like you have a good idea of supplements to take: Vit D, magnesium, probiotics, multivitamin are great!
200mg is odd...should be twice that (400mg) a day. Also, were you tested for co-infections? You may not have a lot of symptoms but if you start treating, you will not get better if co-infections are not treated with high doses as well. Common coinfections include Babesia and Bartonella.
Most importantly...read Dr. Burrascano's guidelines, just google it. This is information on higher dosing and treating coinfections, exercising and supplements!!
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
I'm pretty sure my doctor said I was positive for one of the coinfections but not the Lyme (CDC protocol?) She said the Doxy would be my best bet and she prescribed only 100mg twice daily.
But now that I think of it. The pharmacy couldn't make out the slip and gave me 10 Doxy the first time. I told them I was supposed to get 60 and they called the doctor to confirm. I got the 60 pills but maybe they read the mg wrong too? I will call the doctor asap to find out if it should have been 200mg.
Just an update - I guess I'm herxing pretty strong 'cause all my joints are way more sore than recent memory and the ringing in my ear is up a few decibels! Tell me this isn't a Doxy side effect but that damn Lyme being DESTROYED and crying out in agony!! Posts: 10 | From Rockland County, NY | Registered: Jul 2011
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Doxy for a co-infection?? Which one?? Doxy isn't the top treatment for Babesia or Bartonella. Is it Erlichia? Then Doxy would treat it. I'm a little concerned about your LLMD especially if she treats according to CDC...
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
No no no... she doesn't treat by CDC protocol. She said that I didn't test positive according to the CDC but that that meant nothing. She did a bunch of other test (which I made the assumption was for coinfections) and that one of them came back positive. Not sure what that other thing was, Obviously I need to ask.
I'm an idiot sorry. Been reading too many different things on Lyme the last 72 hours. I'm giving myself Lyme brain! Jeez Posts: 10 | From Rockland County, NY | Registered: Jul 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
First of all Welcome! I am glad you are not extremely sick.
Doxy is the usually the first drug used in treatment but 100 mg twice a day is too low. As other suggested it should be 200 mg twice a day.
Doxy is effective against ehrlichia as well as borellia and works somewhat against bartonella and babesia although it does not cure it. People sometimes take doxy when they go to Africa to prevent malaria.
You should not lie down for at least an hour after taking it to prevent acid reflux. I always took it with food to help prevent indigestion. You also need to stay out of the sun as you will burn very easily - in minutes.
Two months probably will not cure you since you have been sick for two years. They say be prepared for a marathon, not a sprint. But not everyone gets terribly sick. I have had ups an downs; right now feeling pretty good.
Hang in there through your herxing - it is tough - but well worth it. Keep coming back. People on this site are here for each other. You get a wealth of information and support here.
-------------------- 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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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Antonio, you will learn that doctors are not gods. They don't have magic powers.
You will find some very good ideas from many many people on how to change your toxic world. How to do many simple things that will work with abx to help your immune system beef up and fight this bacteria with the traditional meds.
By the way, I would say the doc meant 100mg 2 times a day. That is standard protocol and in the book.
You might want to let this doctor know the book they are referring to is a very old edition. They might need to know the year is 2011 and to get with the proper protocol.
You might need to set this doctor straight. I know that's hard to do. But you are in charge of your health and well being.
This is very important to you to get the proper care so this is not hanging around and not properly eradicated now.
You will need to be adament with your advice to the medical field. I know they have the degree on the wall, BUT this is your life.
There is more than horror stories. There is also stories of many that have won the war. Don't think negatively. Be proactive, not reactive with this.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Antonio:
Welcome. I would suggest reading Dr. B's Advanced Topics in Lyme Disease.
Dr. D in Boston, indicates at least 18 months so that is what you are looking at once treatment starts.
In either case expect herx's and becoming more ill before you become better. Doxy is just a start, keep a diary of your symptoms.
Avoid the SUN as Doxy burns are terrible.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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onbam
Unregistered
posted
That's hard to say; some get better rapidly while others stay ill for a long time. With mild symptoms, hopefully you'll fit into the former group.
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posted
Ok, so it's been almost 5 weeks since I was here. Here's whats happening and what I've learned...
Been on 200 mg a day of Doxy and have had a substantial decrease in symptoms - joint swelling/pain, numbness in my fingers, urinary problems, concentration.
I am extremely physically active and eat well so my body is better prepared to recover than I think a lot of people on this forum. This is why my Dr has me on 200mg a day and not 400 like so many people are suggesting. I'm feeling much better so I'm sticking with what my Dr prescribes. Been to the beach a bunch of times but reduced my sun exposure by 40%. Never got a "Doxy burn" but definitely notice greater sensitivity to light - and sound. Maybe 400 mg of Doxy would make a bigger difference in side effects?
Anyway, I did Herx 10 days after starting treatment and stayed home for 2 days because I was pretty sick. It lasted about a week. After that is when I noticed my symptoms started to decrease.
Overall treatment is going well and I'm able to stay very active. Will follow up in another 5 weeks. Good luck to you all.
Posts: 10 | From Rockland County, NY | Registered: Jul 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I'm glad your treatment is going well! That is always good news to hear.
I hope you continue on this path! Good luck.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
One thing that helped me a lot is accepting the fact that I will be in treatment for years. Just taking it day by day. I don't expect to get better quickly. It took me a long time to realize that though.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
pretty much what people have been saying. it "could" be a long road. and it could still get worse before it's better. hang in there.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Cherish the "good" days and stay positive that you will get your life back!
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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