posted
I'm terribly confused on this question. I have been reading posts on this website and others for years (well since I was diagnosed 3 years ago). I am still able to work, care for my kids and do my motherly duties at home. Most days I have to dig deep within to do most of these things, but I do them. Most of my symptoms are the extreme fatigue, body pain/joint pain, some brain fog here and there and minor neurological symptoms. When I read how other people are (bed ridden, surgeries, death) does it mean this is what I have to look forward to in the future? Or does it mean that they have it worse than I do, or does it mean the lyme hasnt settled in my organs or brain? When I read other peoples posts, I tend to get very emotional and depressed when thinking this will be me in 5, 10, or 20 years. Then I disappear from the websites for awhile and try to ignore the disease and move on with my life. I was treated with many abx for about 5 months and just recently took a break. Against the advice from my LLMD of course. I lost tons of weight (was already thin) and could not function normally as a human being/mother. I was really going downhill. I am not feeling better during this "break" but can at least function as a person. Sorry, I'm rambling now, having an emotional day and alot on my mind. Thanks
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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posted
Forgot to add that I did ask my LLMD this question and he said I am a "classic lyme case" then said those things you read online about people bed ridden are mostly people that are hypochondriacs or "quacks" is the word I believe he said. I lost some respect for him when he said this...
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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posted
Wow, I think I would have to find a new llmd if I heard that. IMO, I think the really sick have had this disease for a longer time. They are also infected with more co-infections. Our genetics play a role also.
Posts: 323 | From Michigan | Registered: Sep 2006
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posted
Its a good question. I'm the same as you. I can do all my functions and just have some minor annoying stuff. No severe aches or pains, no bad fatigue, just before my period really that's it. Have only taken small amounts of abx. I think it has a lot to do with genes. If you have bad genes and can't detox well then you could probably stay sick for a long time. Just based on a few things I've read. I'm not as much of an expert as some are here. Hope your day improves.
Posts: 267 | From South | Registered: Oct 2011
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quote:Originally posted by DanielleMC: I'm terribly confused on this question. I have been reading posts on this website and others for years (well since I was diagnosed 3 years ago). I am still able to work, care for my kids and do my motherly duties at home.
Most days I have to dig deep within to do most of these things, but I do them. Most of my symptoms are the extreme fatigue, body pain/joint pain, some brain fog here and there and minor neurological symptoms.
When I read how other people are (bed ridden, surgeries, death) does it mean this is what I have to look forward to in the future? Or does it mean that they have it worse than I do, or does it mean the lyme hasnt settled in my organs or brain?
When I read other peoples posts, I tend to get very emotional and depressed when thinking this will be me in 5, 10, or 20 years. Then I disappear from the websites for awhile and try to ignore the disease and move on with my life.
I was treated with many abx for about 5 months and just recently took a break. Against the advice from my LLMD of course. I lost tons of weight (was already thin) and could not function normally as a human being/mother.
I was really going downhill. I am not feeling better during this "break" but can at least function as a person. Sorry, I'm rambling now, having an emotional day and alot on my mind. Thanks
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Marcie, a new LLMD is pretty much out of the questions as he is the closest one to me and is about 5 minutes from my home. I'm lucky I have one so close and he really is a good DR.
Thank you Lymetoo, I tend to forget about that.
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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posted
I agree that some of it is genetics, some is how healthy the person was to begin with, how well they take care of themselves and watch what they eat (drink, smoke).
But the major thing is the number of coinfections. Some patients have ONLY Lyme, some have Lyme and babesia, some have lyme, babs, bart... some have all of those plus RMSF or ehrlichiosis, viruses, etc. The list can be very long!!!
and then there is the TREATMENT they are receiving. Some are not receiving good care.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Got ya Lymetoo. I was never tested for the coinfections. I think he was trying to save me money because my insurance does cover when I go to see him but of course wouldn't cover the lab Igenex which I believe is the one that tests for coinfections. thanks
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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posted
So in other words, I am NOT destined to be bedridden and having heart attacks and hip replacements? Every LD patient is different and I can stop stressing about it?
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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posted
I noticed you ingnored my earlier post but I think you can stop stressing. Any one can have a heart attack Lyme or no Lyme. I like what Lyme too said.. It sounds right. I know I have just one co-infection. I consider myself lucky I guess. I've also beaten it back pretty well. Good luck. Don't stress. Stress just makes it all worse. :-)
Posts: 267 | From South | Registered: Oct 2011
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posted
Hopeful - I could not answer any of those questions, I am not "medically" as smart as some people here. Kinda just learn as I go.
lot11 - I'm sorry, didn't mean to ignore you, i really didn't even see it! your right, stress makes it worse. I guess I just needed confirmation that I am going to be ok. Do't really have anyone to talk to about this stuff except the people on this forum.
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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posted
May I suggest that if your doctor did not test you for co-infections, he is not an LLMD.
Regarding the testing for co-infections, some of those tests are also not very reliable. Mine turned up negative. However, my LLMD treated me for them anyways, as though I did have them. This is an important point.
Please consider finding a real LLMD through a local support group, or in Seeking Doctor on Lymenet.
Please go to the www.ilads.org website and read Dr. B's Treatment Guidelines, if you have not already. You will find some good info there to guide you.
All the best to you.
Posts: 873 | From WA | Registered: Dec 2005
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quote:Originally posted by DanielleMC: So in other words, I am NOT destined to be bedridden and having heart attacks and hip replacements? Every LD patient is different and I can stop stressing about it?
-
YEP!!
I was undiagnosed for 42 yrs and I am well today!
I do have heart issues, but it runs in my family.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Hopeful, he really is a LLMD, must just not have felt it necessary to do the expensive testing. I have only been seeing him for 5 months or so.
He said we would try to treat the Lyme before doing Igenex testing, which is expensive. I kind of appreciated that beings I am a struggling mother of two kids and single mother at that.
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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posted
No worries Dani. I hear you about not having anyone to talk with. Not many communities have strong support for Lyme people. I'd like to see that change. This is just as much of a disease as any other disease out there. Randi, that's inspirational to know your mom lived to 83 with Lyme. :-)
Posts: 267 | From South | Registered: Oct 2011
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posted
that is inspirational randi, to know she lived that long. Thank you for sharing that.
lymetoo, I didn't know that about coinfections, so much to learn and know. Seems like I'll study up on lyme, get a pretty good understanding of it, live life and busy schedule with kids and forget what I've learned due to this ridiculous memory of mine! Maybe I should pursue the coinfection testing... hmmmm
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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posted
Hi Danielle, Sorry, maybe what I said didn't come off right.
Being a single mom is such a challenge, and you have so many responsibilities, so that is of course top in your life. Then adding onto that being ill with lyme disease, well, you are taking a tough situation and doing your best!
All the questions I rattled off, well, I meant to ask if your doctor had checked into them. I didn't mean them to be testing you in any way.
Many of us have, like you, gotten worse during treatment, before getting better. If antibiotics are making you so very sick that you couldn't function, then taking a break sounds reasonable.
Posts: 873 | From WA | Registered: Dec 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
just to clarify it wasn't the lyme that killed her.
she fell and broke her arm in the garage, got pneumonia. then got mrsa in the hospital. they treated her with massive abx, but not probiotics, so she got systemic yeast.
then blood clots from being in the hospital for five months. finally organ failure.
but then they checked and lo and behold, she had congestive heart failure which her doctors never found!!!!
so no it wasn't lyme it was bad doctors...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I believe another reason some people are sicker has to do with the number of bites. My sister and I both have Lyme disease. Both were bit the same summer in the 70's. She was rebitten 3 years ago and is so much worse than I am. Of course, we only discovered in the past year and a half that we even have Lyme disease.
I can work full time and she is too sick to work.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Please everyone don't forget about the different strains and species of Lyme-causing-bacteria!
They have even researched and found some are far more virulent (cause worse disease) than others.
Another factor is how long one has been infected, and if there has been any physical trauma.
Many people recall that right before they got sick and never got better, they had either:
1. been in an accident, 2. had surgery, 3. received steroids or taken drugs that depress the immune system, 4. gotten very severe Mononucleosis or another virulent infection, 5. suffered a concussion, 6. had a baby, 7. or another high-strain situation
that possibly overwhelmed the immune system or caused a blood-brain-barrier weakening (head injuries, car accidents...).
When the blood-brain barrier (strong tissues that protect the brain from blood and infections) is weakened, Lyme and co-infections can more easily cross into the brain and central nervous system, increasing the pathogen load.
The brain does not have much of an immune system at all, so once in, infections can run amok. Many don't realize that head injuries, and even some drugs, can cause damage or weakening to this barrier.
There are many other possible reasons for varying levels of illness with Lyme and co-infections. I am an example of someone who ignored my symptoms since I was a little kid until they became more and more pronounced. The symptoms began to effect everything about my life, but by then I was in total denial and didn't want to deal with it or face it.
For many years I just thought I was sickly and was catching the flu or other infection every week, I had chronic sore throats, chills, low-grade fevers, and dropped like a dead weight as soon as the end of the work day was near. I no longer could have any fun, just barely made it to work and through the day.
I eventually became completely housebound, had frightening heart events with severe tachycardia that sent me to the ER, was unable to write my name or spell, or do simple math, or just walk without bumping into everything.
Every time I tried to exercise I became icy cold, turned pale and blue, became extremely shaky, and my feet fell asleep and my tendons popped and felt like they were tearing with every step. I couldn't ignore it any longer. That took me about 30 years.
My lymph nodes were very painful and swollen, I had chronic aseptic meningitis, I was in constant level 8 to 10 pain in seemingly every joint, muscle, or nerve.
By the time I finally got a correct diagnosis and began treatment I had become bed-bound, began having seizures, developed many food sensitivities, neurological problems, and was so sick I felt like I was dieing every single day.
I had gone from a few migrating and infrequent symptoms with general fatigue and malaise, to all-out undeniable life-destroying illness with over 100 symptoms (not even exaggerating).
Some people treat well before that stage, and they have a much better chance at a speedier, easier recovery without as many complications.
I wish I hadn't waited so long, and hadn't ignored my pain, fear, and suffering.
If you have symptoms, please find a way to treat this illness that lowers the risks to your daily life. There are ways to treat low and slow and work your way up, so that you don't overburden your body and become unable to eat or gain weight, etc.. Please keep trying.
quote:Originally posted by DanielleMC: Forgot to add that I did ask my LLMD this question and he said I am a "classic lyme case" then said those things you read online about people bed ridden are mostly people that are hypochondriacs or "quacks" is the word I believe he said. I lost some respect for him when he said this...
Wow. This makes me angry even though I'm better and it's not my doctor. Sheesh. Let's put it this way. If I were a quack or a hypochondriac, how would it be that I am well today? Wouldn't I still imagine I was sick? Wow. It would have been tough for me not to slap that guy.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
you go girl....sixgkids
anyway ,I started out the way you did, up/down but usually could get stuff done. even had my only daughter's triplet's and her husband all living with us ,took care of my kid 24/7 as she was on her 3rd, in-vitro and 10 preg/try.
then she pulled a slammer and moved to her husband country when the babies were 9 months old. my Mom died /not expected that very week .. I tried to buckle up. take time to cry and go on. we travelled there for their first b-day.Aug. I was in hospital by mid Oct.
so many doc etc.. Not to say this could happen to you. and I know your stresses are high..just do anything you can to build up your body and immune NOW.....and never,never,never take steroids. I went from a somewhat function level. to all H --- breaking loose in 8 hours. not been the same since ,.. and that was over a year ago..
Give those kids a big kiss Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
As you have all said, some are sicker than others due to co-infections and/or viruses. And also factor in the numbers of years in struggling with this disease.
But I would also like to add that it certainly helps if you can tolerate the abx that you have to take to get better!
People with a sensitive digestive sytem cannot handle agressive combo abx to treat Lyme and co., or cannot tolerate certain classes of abx (such as macrolides) which are important for treatment.
It helps you get better sooner if you can just swallow, and keep down abx... or even certain supplements.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I personally believe Babesia is the lifeline killer for people. It makes one have no quality of life whatsoever. Many here say they have Lyme and can do plenty physically and function. Those with B. Duncani lose it all. Just a theory, but it's a dangerous bug to contend with. They all are, but this one seems brutal.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Dani, I think the points everyone is making about a co-infection are good. Have you looked at the lists for some of them? If not google them and see if any fit. I'm dealing with just bartonella and since being on the correct drug to treat that I've seen a huge difference. Seek, I've heard that about B duncani. I guess the other strains of B are easier to rid.
Posts: 267 | From South | Registered: Oct 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Yes, Babesia is very difficult to contend with. I've been treating for a year and am not sure when I'll ever be off the meds. What is even worse is my 8 yr old daughter has it.
What's very ironic: there is a juvenile fibromyalgia commercial on right now. what a bunch of you know what.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
The reason my son was so much worse was because of toxic mold. He has lyme and many co infections...but the mold made him sicker then any of these other things.
We moved out of our house on April 16th and he was much better 4 days later. He went from bed bound and wheel chair to playing and riding his bike!
He still has lyme and cos... now we have an LLMD that put him on supplements that help him detox, and herbs that target thw infections.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Randibear - that's just awful what your mother went through!
Nenet - You hit the nail right on the head when you said that some people don't notice their lyme symptoms until after something traumatic happens. This is so true for me, well nothing traumatic happened, but I didn't start questioning my health until AFTER I had my second child. I was 24 at the time. I was first bit about 16 years ago and never ever noticed anything. Now there is always a possibility I could have been bit since then and it went unnoticed. Crazy though.
Thank you for your advice on getting this taken care of and not waiting. It sure sounds like you have been down one heck of a rocky road.
Nonna05 - how do you suggest that I build up my immune system now? (BTW, my kids call my mom NONNA lol)
Sixgoofykids - I didnt know what to think when he said that! He said stay off those websites...geez
Lost - I am going to check out that symptom list here in a few.. It always seems like I have so many symptoms from each list.. Kinda hard to differentiate one thing from another.
Jackie - What a bunch of crock! Juvenile fibro! wow. They are so quick to diagnose fibro, it's sickening. I was diagnosed with it for a few years before he found the lyme.I finally went into my PCP's office one day and said I just know something else is wrong, please just run every test you can think of, he ran everything from lupus to ms to a to z. and low and behold a positive lyme!!
Thank you everyone for your comments!!
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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posted
Your LLMD not testing for coinfections doesn't mean he/she is a bad LLMD. I see one of the top LLMDs and he never tested me for the coinfections because of the expense and because they are largely unreliable, BUT he does treat for ALL coinfections from the start of treatment.
I did have a positive Igenex lyme test and with that, no need to test for the coinfections. It is just assumed they are there. He is covering all 3 coinfections with the medications I am on. Your LLMD needs to do that.
Posts: 618 | From NC | Registered: Oct 2009
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posted
Dani.. I hear you. It was very confused when I was given the lists for the two popular ones babs.. And Bart. But what I relalized was the more I came to know my body, I saw how my night sweats only came near my menses. And I'm in perimeno so that explains that... Its not babs. After all. I am very classic to Bart though. Just takes a bit to sort it all out. Hang tight.
Posts: 267 | From South | Registered: Oct 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
I'm still very down and trying...The worst thing I did was get steroid shots. .Took me to a much worse level. also I went to 7 different ID plus every other kind there is,for over 5 years... I was because I got curious about Lyme that I got the Western blot just this summer.
Now I get the rest of the story,...
Building immune, Make sure your,Vits. D,B,potassium adrenals and hormones are OK.
I know you're on a tight budget. So there's this powdered food called ALIVE at vitamin stores
Eat a ton of probiotic stuff.. Not sweetened ,fruity stuff and take high doses of the pill. or powder form doses. And mix it up, lots of variety.
There's One called VSL#3 ask doc if he'll write a script for it. Not Lyme HA<HA but for gut trouble. It's strong , but expensive.
And for GOD's sake don't wear yourself down to a pulp...Cause that's what you'll be dealing with while trying to heal. I know of which I speak.
Italy was my favorite place to visit ,but now it's the REP of Georgia if I want to see my triplet Grand-daughter's. Kids not place. That's when I could travel, before these steroid shots.
So when babies were on the way Nonna was the only thing I wanted to be called. In the country they live in, hubby from there, they just call their Grandparents by their first names
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
This is a great thread. I have often wondered this myself because I crashed hard. My symptoms came out with birth control and immunizations (don't know which one caused the most damage).
I also have all 3 B's, viruses, adrenal issues ect. Im a mess! I think its due to the more infections you have and factors that influence the immune system like stress. I was only 26 when I crashed hard so I don't believe its age related and I exercised and took care of myself.
-------------------- 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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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i had some duck years ago tell me i would be dead in five years or in a wheelchair. well i ain't either!!! at least i don't think so....
i treated for over two years with abx. did feel some better but not all, so i stopped. i've been doing everything i can imagine and i'm still functioning. oh not great, but i function.
right now with my pneumonia i have backslid big time. the exhaustion adn all is bad. i'm still on ceftin twice a day, plenty of rest.
lyme is a crapshoot that's for sure.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I've been thinking about this a lot lately. I'm sure I'll repeat what some of the posts say as I didn't read all of them.
As mentioned there are many different variables, but I think one of them is that each tick carries a different cesspool of bacteria. It depends on which bacteria are carried by the host that fed the tick in the first place. So, it makes sense that we all present differently.
Most likely the person that is not getting well is not hitting the correct bacteria as there are hundreds that can be carried by the tick.
Also, the tick emits a chemical that turns off the immune system so, we are at even more of a disadvantage to fight it.
That's why I'm relying more on prayer these days rather than trying to figure this stuff out.
I'm hoping that the anti-parasitic treatments are going to be getting people well. It's now being used and there is research that has begun with these meds.
Okay now I'm rambling :0
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Just a theory, but it's a dangerous bug to contend with. They all are, but this one seems brutal.
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