posted
I got Lyme + coninfection early this summer. High fever + symptoms started mid june. Got positive lab results July 31st. Antibiotics started August 1st (oral doxy). The heart palpitations, severe exhaustion have gone away, but still have chest tightness, and some tiredness that comes and goes.
From reading this forum, it looks like nobody truly ever gets better. Is that stuff on the CDC website just propaganda - about majority of cases treatable with abx, etc?
Can somebody shed some light on what is there down the road for me?
thanks.
Posts: 29 | From NY | Registered: Sep 2007
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posted
Yes, some people do. They have found treatments that work for them. There's quite a variety of treatments. Keep learning about what people try.
This is a very good board to learn about options. Plus there is a lot of info for new people at the top of Medical Questions.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I think since you caught it quickly, you can get cured more easily. Just make sure that they put you on a high enough dosage and for at least a few months. Other than that, it will come back. Are you seeing a Lyme specialist?
The cases here, I believe the majority, we were misdiagnosed, or given too low a dosage of abx so that all the bacteria were not killed and it came back.
You sound like you're well on your way to health!
Posts: 366 | From MA | Registered: Apr 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
There are only a few who stick around here once they get better, so most people here are dealing with active Lyme just as you are.
I am getting better, but I went undianosed/misdiagnosed for 35 years, so it's going to be a long process for me.
Read the post about Dr. J's response to the NC medical board ... it explains a lot about the CDC, etc. Yes, much of the CDC and IDSA opinions are not based on scientific evidence.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YES YES YES people get better!!!!
JUST like in real life support groups for Lyme, the people who dominate here are the longterm chronics. Because just like our Lyme, we never go away*)!!!!!!!!!!!!!!!
But there are plenty of people who get completely better and move on!!!!!!!!!!!!
I get phone calls at my house because my # is a hotline and many people DO get better and move on. But some people don't get all the way well.
It depends on how long you have been sick mostly- the shorter time since bite, the greater chance for 100%!!!
However, even longterm chronics can get 100%.
I know someone sick years and years who went into full remission and remains there today (saw her yesterday in fact*)!*)!! 7 years sick pre 2 years of IV Rocephin and she has been in remission ever since!!! 7 years or so now!!!!
The most success I see is in people who do 2 things:
1. treat with longterm abx 2. treat all possible coinfections
Those are the people I see do the best. Not everyone can do both those things- some people have abx-intolerant guts- but those are the people I see get the most health back!!!!
WELCOME*)!*)! !*)!*)!*)!*!
YOU ARE EARLY!!!! My advice- jump aggressively into treatment and don't get sidetracked by things that will possibly make you chronic for life!!! Time is vital!!! Don't waste it!!!
How much Doxy are you on??? Unless you are very petite standard LLMD dose for Lyme is 400 mg- 200 twice a day!!! Wear gloves when dirving or you will get a rash!!! DOn't drink with milk because it chelates- and take with starchy food if it makes you too nauseous!!!!
DOn't go off until 2-3 months with NO SYMPTOMS is standard LLMD advice re when to stop!!! IT IS NOT WORTH GOING CHRONIC FOR LIFE!!! Just stay on until you are well for sure!!!
You are early enough that you have a good chance of not going chronic for life.
Doxy will treat Ehrlichiosis/Anaplasmosis if you have it. It will also semi-treat Babesiosis. Make sure oyu get evaluated for Babesiosis!!!
You said coinfection- which one??? If you have Ehrlichiosis or ANaplasmosis the tx toyou are on will work for both- if you have Babesiosis or Bartonella you need more than what you are on!!!
WELCOME AGAIN!*)*!)! !*)!*)!*)!*!)!!!
& I hope you are just a visitor(_!*)!*)!
Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
thanks for all the replys guys. I have 3 coinfections - babesiosis, bartonella, and erichliosis according to my LLMD. He has me on 100 mg of doxy twice a day. I think he started me light because I am a bit thin. He mentioned "layering on" other abx's after subsequent vistis.
Posts: 29 | From NY | Registered: Sep 2007
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posted
My advice to you, based on my experience & my reading is talk to your Doc about the wisdom of taking multiple abx (perhaps doxy, flagyl or alinia, & zithromax) to treat the 3 known forms of LD (blood borne spirocheete, cyst form & L form) at the same time
If you don't treat all 3 forms, you have a greater risk of LD getting entrenched in your body & coming back bigger & stronger.
Good Luck.
Posts: 213 | From ohio | Registered: Jul 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Remember that many of the people on this board had Lyme for years undiagnosed.
I understand starting low, but 100 mg of Doxy is really, really low. My understanding is that it's not going to touch the Lyme. Do you have any idea of the plan to increase antibiotics?
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bettyg
Unregistered
posted
welcome blossom; you are lucky your lyme/co-infections have been caught early.
success stories are in support section.
i just sent you a pm, private message, of my 77 pages newbie links, advise, symptoms, tests, disability, much more including treepatrol's archive of newbie links of good info.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
People do get well, but it takes time, time, time and more time for most. There is no overnight cure, I had to really accept that early on, that it could take months or years before I might feel better.
By the time most of us figure out what is wrong with us we are chronic. I have learned just because you may find the tick on you or find the bulls eye rash, it is likely not the first time you have been bitten. It may be "the bite" that breaks the camels back so to speak.
According to my LLMD the bacteria is never fully eradicated, but our immune systems can keep it in under control or in "remission" - then what you hope for is that you aren't bitten again or that your relapse.
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
The chest tightness for me was Babesia. In addition to shortness of breath, sweating, palpitations, teeth chattering chills.
Keep treating and you will improve.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Pocono: How long did it take for that chest tightness to clear up? Which abx addressed the babesia for you? thanks.
Posts: 29 | From NY | Registered: Sep 2007
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Blossom It only took a couple of weeks on Mepron 2 tsp twice/day and Zithromax 250mg twice/day.
EKG etc. were normal.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Update: went to LLMD this morning. We reviewed my progress since starting abx treatment about 6 weeks ago. My extreme exhaustion went away after treatment started but still have intermittent chest tightness, dull pain in lower legs some days, and heart beating fast on rare occassions. Doc said we'll up dosage of doxy from 200mg per day to 300mg per day for the next 2 weeks. If symptoms abate in next 2 weeks I think he'll continue on doxy, if not will start some meds to work on my babesia at that time. I got sick this summer and I think about 2 to 3 months passed before starting treatment. How long do people take to get better assuming they started treatment within 2-3 months of bite? 6 months? 12 months? years?
Posts: 29 | From NY | Registered: Sep 2007
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quote:Originally posted by blossom: Update: went to LLMD this morning. We reviewed my progress since starting abx treatment about 6 weeks ago. My extreme exhaustion went away after treatment started but still have intermittent chest tightness, dull pain in lower legs some days, and heart beating fast on rare occassions. Doc said we'll up dosage of doxy from 200mg per day to 300mg per day for the next 2 weeks. If symptoms abate in next 2 weeks I think he'll continue on doxy, if not will start some meds to work on my babesia at that time. I got sick this summer and I think about 2 to 3 months passed before starting treatment. How long do people take to get better assuming they started treatment within 2-3 months of bite? 6 months? 12 months? years?
I was sick for 2.5 years before finding effective treatment, and it's taken me 8+ months to be nearly cured as far as we can determine. My case is probably not typical though, as my doc really likes to try new things and is good at thinking outside the box. If I'd had just the 400mg of Doxycycline I was on last fall, it would have come back after I stopped. Many docs don't know about using Tindamax at the same time as the regular abx, and just prescribe one abx. Virtually guarantees a relapse.
On a side note, my father in law was bitten by 2 ticks, developed 2 bullseyes (figure the odds). He got treatment started within 2 weeks - I really pushed Mom to get him to a LLMD ASAP. Turned out he had been bitten about 10 years ago, had some arthritis symptoms, tested negative for arthritis, and basically lived with low-grade pain. He was on some prescription antiinflammatories, and the doc thinks that helped him considerably. Once he started treatment, he improved rapidly, and after 6 months was pronounced cured. But his case was different than mine; he had it longer, lower intensity and damage, whereas I got laid right out, more damage, etc.
Posts: 131 | From PA | Registered: Aug 2007
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