My girlfriend has had terrible health problems for the past few years that have gotten progressively worse. Really odd symptoms. At times they seemed as much mental illness as physical illness. Doctors weren't helpful at all. She just got a diagnosis of Lyme. Apparently somehow she has had it for years w/o knowing it and it has possibly been the source of her terrible health problems.
Apparently there are all sorts of nasty things swimming around in her blood stream and elsewhere. She has been told about bartonella, borrelia, and babesia.
Is anyone here familiar with all this? Especially if you have personal experience and good outcomes.

[-jimi-]

If someone had untreated Lyme for years, I doubt they will recover. I assume they got treated with antibiotics and that didn't do much good.

Lyme can really mess up your own immune system, and in some people it messes with brain cells. That means, even when the bacteria is gone, the autoimmune attacks will still continue.

Doctors don't know really what to do with Lyme, it was just a decade ago they admitted it could have lasting effects and a few decades they admitted it existed at all. So don't assume THEY know anything what to do.

Sometimes there are coinfections with Lyme but all this is rather vague and unknown at this point.

I myself went to doc just 2 weeks ago with acute Lyme and got totally brushed off and told it was all in my head. In this state it should be treated rather aggressively because a second round antibiotics usually does not take. But she gave me half the dosage that I should have had.

I guess I'll also be one of those people now who no one believes, who will be called crazy as the illness progresses.

I'm sorry your GF didn't get treated in time, you have less than a year after infection before it gets really hard to treat.

I'm familiar with the idea that Lyme disease can have a chronic form. Not everyone believes that.

I was diagnosed with chronic fatigue syndrome back in the 1990s and met a lot of people also diagnosed with it during that decade. A couple of people ended up finding out that they had a chronic form of Lyme disease (either in addition to, or instead of CFS). They improved greatly when they took a long course of antibiotics.

The good news is that antibiotics can help. The bad news is that I'm not sure the Lyme disease can actually be completely cured if it becomes chronic.

It can indeed cause psychiatric and nervous system problems.

It's good that you're in an area where there are some alternative/holistic health practitioners. Anyone who only has access to "evidence-based" medical practitioners can be out of luck in getting treated for a condition like this.

I'm glad to hear that she has gotten a diagnosis. It's so frustrating to have a medical condition that no one can seem to diagnose.

There's a ton of stuff online about chronic Lyme disease. Unfortunately, it's a subject that comes with allegations of a "cover-up", so you get that stuff along with the medical information.

A friend of mine thought she might have Lyme a couple of years ago, and I helped her research it some. Her illness turned out to be rheumatoid arthritis, which isn't a good thing to have, but there are good drugs for it now. ;

[-jimi-]

There is a lot about Lyme out there and I think it is because it has been ignored by the medical community. People pay all their money into alternative treatments just because that is all they have.

Some antibiotics also have anti inflammatory properties, I think this is why many do feel better even if it is said they do not have an active infection anymore.

Of course you must first make sure there is no active infection, someone who never had the antibiotics will probably have the bacterium unless their bodies could fight it off.

I saw someone go through basically all alternative methods. None worked. Might save some people money right there.

I think if there is no bacteria anymore, the focus should probably be on limiting inflammation and basically treat it like an autoimmunity.

Yes, it's one of those odd diseases. Apparently there is still infection because a complex course of antibiotics is going to be the centerpiece of treatment. Doctors haven't been very helpful over the 3 to 4 years this has been causing serious problems. The doctor who has recently come on board and been most helpful was a Lyme disease victim.

[-jimi-]

It could help, I don't know her treatment history.

I think it really takes a Lyme victim to help another, because everyone else brushes this off as being pretend.

Where I live they have the idea that a very short and weak course of antibiotic will wipe out Lyme, but it really does not. So now both myself and a family member who had it and got treated are falling ill again. I really hope the doc understands my family member has neuro borreliosis and treats accordingly. They sort of missed the opportunity though, since the first treatment approach is your best bet. I'm waiting for my own symptoms to crop up and tell me my life is over.

Anyway, yes it is a weird illness. The ice mummy they thought had arthritis, came out he had Lyme. So it is a really old bacteria.

Thank you, you've been helpful. I see your location is Northern Europe. She is from Eastern Europe but has lived in Japan and Western Europe mostly. This all began in Western Europe, France or Germany IIRC.
She doesn't have a treatment history for Lyme as best I can recall. I've only known her three years but I know that for the last five years doctors have treated her for anything but Lyme. She was tested for Lyme bacteria in 2012 but apparently they didn't do all the tests that should have been done to catch what I'm speculating are the sneakier bits of Lyme disease such as bartonella and borreliosis. The doctor said that those are what are responsible for her current condition. The way she describes it is like a severe case of chronic fatigue along with tunnel vision, vertigo, bouts of derealization and anxiety. Some depression too but not as much as I'd have it I was in her condition.
And no, she doesn't think she will be cured exactly but she hopes to see a lot of improvement.
She could explain much better than I can. Maybe I can convince her to join PC. She was a member here for a short time in 2012 but left when she was going through a period when she wanted to shut off contact with pretty much everyone and disappear.

[-jimi-]

Long time with no treatment at all!

Then she might really have infection in her system. It's very hard to treat blood for Lyme and the classic test gives way too many false negatives. It might be "good" in a way that she is fatigued if she has Bartonella since it can cause skipped heart beats if you really exhaust yourself (people actually died from it). She is probably exercise intolerant but just cuz I can say this, she probably should not exercise hard at all.

If she now is treated quite aggressively, I do think she will get rid of the bacteria. But having it in your system that long probably caused damage. If I compare to someone I knew who refused treatment for two years, some of her symptoms totally vanished while others stayed but only became a real problem if she was really down and tired. As long as she sleeps and eats OK, she is quite OK, if not a 100 %.

I hope the GF will have a good result from the treatment.

While I can, I should also add something that most doctors do not know, and do not accept as truth. A bulls eye rash from a tick bite (what they basically want you to display or have had to "have" Lyme), is a male thing. Females have a much more forgiving immune system and it is actually quite unusual for a woman to get a bulls eye. Sometimes they do but not often. More often they get a one color rash, several dots or... no rash at all (very common).

The Lyme dizziness is really something else. Ugh. And I heard others that had mental problems with Lyme (part of neuro borreliosis), in their case the mental stuff did clear up, but it took time, it didn't happen at once after treatment.

I know I keep on the negative side here, but it can be a quite nasty illness. We're having more and more cases every year here and I think most of Europe does. It seems like it mostly have to do with an exploding tick population. One summer I had 40 tick bites. Yay...

It doesn't seem negative... just realistic. At this point its just good to get something that might lead to an improvement. The negative has been there for quite a while. Right now she is basically bedridden and living with her parents. That has been maybe the hardest part.

[Raindropvampire]

My MIL was misdiagnosed for 4 years before she found out she had Lyme disease. Because she'd had it so long with no treatment it had done permanent damage and she will suffer ill effects the rest of her life.

If it's treated quick enough most people recover fully. Even people like my MIL who have had it for years can recover fully with antibiotics she just happened to be in the unlucky percentage that didn't. She had other health problems that I think complicated the matter. Plus she was older and the doc said that didn't help.

Here in the states it's almost exclusively carried by ticks. I've known dozens of people who have gotten it but realized it early on because of the rash. They all responded well to the antibiotics. Scary part here are some of the ticks that carry it can be so tiny that you wouldn't even know they were on you. Best wishes to your GF

[janiedough]

I am having the same issues you described that your gf was having! It has been almost 2 years since they started and I haven't figured it out yet. I was just looking into b12 deficiency again after being refused as a blood donor due to low hemoglobin, and happened to read your post. Lyme was my initial thought on the problem, as well as a b12 deficiency, but I don't think the doctor I went to initially used the right procedures in the test (it was in Japan), and my current doctor wouldn't retest me for the b12 deficiency because she thought I had an anxiety disorder (which I am not convinced of btw). Due to that, I can't even get tested if I directly asked. How do you find a doctor that will genuinely care and just test you for all the possible problems that aren't due to an "anxiety disorder." I have been struggling to stay strong, but it is difficult. My own bf isn't being supportive and gets mad whenever I talk about medical stuff. You seem to be very understanding and that is nice. Did your gf ever get extremely irritable or have the urge to just yell loudly occasionally after the problem started?

Originally Posted by janiedough

I am having the same issues you described that your gf was having! It has been almost 2 years since they started and I haven't figured it out yet. I was just looking into b12 deficiency again after being refused as a blood donor due to low hemoglobin, and happened to read your post. Lyme was my initial thought on the problem, as well as a b12 deficiency, but I don't think the doctor I went to initially used the right procedures in the test (it was in Japan), and my current doctor wouldn't retest me for the b12 deficiency because she thought I had an anxiety disorder (which I am not convinced of btw). Due to that, I can't even get tested if I directly asked. How do you find a doctor that will genuinely care and just test you for all the possible problems that aren't due to an "anxiety disorder." I have been struggling to stay strong, but it is difficult. My own bf isn't being supportive and gets mad whenever I talk about medical stuff. You seem to be very understanding and that is nice. Did your gf ever get extremely irritable or have the urge to just yell loudly occasionally after the problem started?

I'm really sorry to hear it's happening to you too. She has had the same or very similar issues with vitamin questions. What is it with the health care providers? Maybe due to the blood borne issue its easy to confuse it with other blood issues? She has had some experiences with doctors that are just shocking verging on bizarre. I'm not sure where you are currently but she is in western Europe. What she has gone through has changed my views on European health care. At least for the country where she lives. But the people of that country are not known for warmth and compassion. If you live where clocks and banking are the top priority then you may not be able to find a good doctor. Sorry, got a little ranty there.
I have never seen or heard any extremely irritable behavior or yelling loudly. It might help. It would def be understandable. One big problem is that her parents (mom especially) aren't emotionally supportive but are very controlling. The parent/child relationship has regressed so much. I suppose with her living under their roof again and almost bedridden there isn't much she can do about it. It is very frustrating. Now her mom has been reading up on the dangers of the suggested antibiotics and is dragging her feet about starting the treatment. I think that is crazy considering the circumstances. The sooner it gets started the better the chances of are of a good outcome. She's forced her daughter to faith healers, questionable herbal remedies, and countless quack doctors. Why balk at antibiotics from a doctor who seems to know what he is doing.
I'm sorry but I don't think I can be very helpful to you. Advice but it's obvious and trite maybe... continue to stay strong. Try to remain in control of your situation as much as possible. Keep looking for a good doctor. Try to get your bf to understand the situation and become part of the solution instead of adding to the problems. Keep posting here at PC. At least you'll get some moral support.

[janiedough]

Thanks! I am actually in the US, and I totally agree with your sentiment on the healthcare system. Recently, after actually staying with family (in bed/on the couch just resting most days) for about 2 months time, I have been able to accept the health issues and limit my activities so that I don't inadvertently overexert myself. I have also noticed a couple of times recently that if I indulge in my food cravings for things such as fish and rice when I get that irritable feeling, my irritability and urge to yell goes away. My thoughts are that something nutritional could be the cause for irritability and I can finally easily control it. Yay . My grandma keeps telling me not to take any medicine because it is of the devil, so I can understand the frustration with controlling family members (I just don't tell her about medicine stuff). After hearing about similarities in your gf's situation, I feel less alone in all of this. In reality though, the hardest part is pretending to be healthy in public and at work. People just think I'm weird, lol. Mainly because my coping mechanism is to make light of the situation and laugh at it (not literally, though), so I am usually optimistic despite the bad things that happen to me.

Originally Posted by janiedough

I am having the same issues you described that your gf was having! It has been almost 2 years since they started and I haven't figured it out yet. I was just looking into b12 deficiency again after being refused as a blood donor due to low hemoglobin, and happened to read your post. Lyme was my initial thought on the problem, as well as a b12 deficiency, but I don't think the doctor I went to initially used the right procedures in the test (it was in Japan), and my current doctor wouldn't retest me for the b12 deficiency because she thought I had an anxiety disorder (which I am not convinced of btw). Due to that, I can't even get tested if I directly asked. How do you find a doctor that will genuinely care and just test you for all the possible problems that aren't due to an "anxiety disorder." I have been struggling to stay strong, but it is difficult. My own bf isn't being supportive and gets mad whenever I talk about medical stuff. You seem to be very understanding and that is nice. Did your gf ever get extremely irritable or have the urge to just yell loudly occasionally after the problem started?

Originally Posted by janiedough

Thanks! I am actually in the US, and I totally agree with your sentiment on the healthcare system. Recently, after actually staying with family (in bed/on the couch just resting most days) for about 2 months time, I have been able to accept the health issues and limit my activities so that I don't inadvertently overexert myself. I have also noticed a couple of times recently that if I indulge in my food cravings for things such as fish and rice when I get that irritable feeling, my irritability and urge to yell goes away. My thoughts are that something nutritional could be the cause for irritability and I can finally easily control it. Yay . My grandma keeps telling me not to take any medicine because it is of the devil, so I can understand the frustration with controlling family members (I just don't tell her about medicine stuff). After hearing about similarities in your gf's situation, I feel less alone in all of this. In reality though, the hardest part is pretending to be healthy in public and at work. People just think I'm weird, lol. Mainly because my coping mechanism is to make light of the situation and laugh at it (not literally, though), so I am usually optimistic despite the bad things that happen to me.

I'm glad you're back in the US now. Our health care system may be broken but if you can access it I think you're better off here. I mean at least I know we have an abundance of good doctors here. It's just a matter of finding one and being able to pay for treatment.
-jimi- has first hand experience with Lyme. I hope he is still watching this thread. He may have better input than I do.
I can tell you that one doctor prescribed Celexa thinking that she had depression and anxiety, which she does of course. That was a disaster. I gave her some mild anxiolytics to try for the anxiety. They didn't help. The faith healers obviously didn't help I'd guess she has been to 10 to 15 doctors of various disciplines plus a few psychologists/therapists and 2 weeks in some sort of clinic. And... she was tested for Lyme quite a while back but those tests were either lost or flawed. They somehow reappeared recently
It sounds like you're handling it as well as can be hoped. Keep pushing and fighting.

[Raindropvampire]

Originally Posted by janiedough

Did your gf ever get extremely irritable or have the urge to just yell loudly occasionally after the problem started?

MY MIL said she actually thought she was going crazy because the smallest thing could cause her to explode. It almost destroyed her marriage because she was so up and down with her temper and crying.

She told me that she had thought for years that she had Lyme but every doctor refused to test her and told her it was: depression or anxiety or in her head or bipolar or just associated with her rheumatoid arthritis and or lack of sleep (she had a LOT of fatigue) or she was being a baby.

The only way she finally got diagnosed was she went to the ER and lied. She told them she'd gone camping a few months before in KY and pulled a tick off her leg. A weird rash had popped up then gone away but she didn't feel right. So they tested her and she had it. Then she had to tell them the truth that she'd been trying to get tested for years and no one would do it.

Hopefully you have better luck finding competent medical help than she did.

[janiedough]

I'm not brave enough to lie to a doctor (I probably couldn't pull it off anyway). . It is good that your MIL was able to have the test finally, though. I feel like at least knowing what is causing everything would be very helpful.

I actually really want to be a blood donor, but I don't want to get anyone sick if I could possibly have Lyme or something else still in my system (the other suspicion I have is that the underlying cause was Japanese Encephalitis which I was not vaccinated for even after going to a family doctor to ask what vaccinations I need before going to Japan). I am wondering if going on that premise with a new doctor may work. I honestly hope that I don't have any illnesses (or if I did, it is out of my system), and the only problem is a vitamin deficiency that can be easily fixed. I have ups and downs for this, lol. Right now, I feel like I could finally be getting over this issue since I have not had any mood problems in the past 45 days and haven't been taking any new medication other than a daily b12 gummy vitamin. It could also just be a matter of time until I get another flare up of problems, though.

[-jimi-]

Originally Posted by janiedough

and my current doctor wouldn't retest me for the b12 deficiency because she thought I had an anxiety disorder

It's quite ridiculous how doctors think as soon as we develop something psychological, we don't have bodies anymore so they cannot get sick... sigh.

Low hemoglobin could be low B12 (I assume you suspected that because of other symptoms?), low iron, low folate and hypothyroid is common causes too. All this should have been tested just IMO.

Lyme antibody tests aren't so reliable, if you get one negative there is no guarantee that is correct. People have redone that test 10 times just to get a positive after 9 negatives.

[-jimi-]

Originally Posted by George H.

Now her mom has been reading up on the dangers of the suggested antibiotics and is dragging her feet about starting the treatment. I think that is crazy considering the circumstances. The sooner it gets started the better the chances of are of a good outcome.

She needs the antibiotics ASAP. Which ones and how are they so dangerous?

And yea, doctors over here are crazy.

[-jimi-]

Originally Posted by Raindropvampire

associated with her rheumatoid arthritis

An example of doc craziness. Lyme seems to hit even harder if you already have a known autoimmunity. But it is easy for them to blame something and not treat.

I think there is so much disagreement and controversy about the treatment or even the existence of post-Lyme conditions it has caused many doctors to become wary of getting involved. The most successful cases we've read about involve complex treatment. Some antibiotics treatments can cause the (lets call them) worms to retreat into joints, create cysts to hide in, and develop resistance. The most effective treatment seems to be a combination of antibiotics used at different times. Antibiotic pulsing is a term I've read to describe this treatment.

[-jimi-]

If your friend never was treated she does not have post Lyme, she still has an active Lyme infection!

I think that since so much time has passed it would be more like post treatment Lyme syndrome. There is so little agreement on this in the health care field that they can't even agree on whether it is active Lyme or post treatment Lyme syndrome. Most medical organizations and many doctors don't even believe post Lyme syndrome exists. To them it could be anything from chronic fatigue to Epstein-Barr to psychosomatic.
The CDC considers chronic Lyme and post Lyme treatment syndrome to be the same thing.
It makes it very difficult to get treatment.

[-jimi-]

Untreated the Lyme bacteria can live in your body for years and years. Some people's immune systems can eliminate it, some not. If you had it for a long time, you might not get all better, but you must first deal with the infection itself. Then see what damage is still there.

There is no debate that untreated Lyme can cause lifelong illness. It's more about that treated Lyme should not persist and worsen, and some think it does that still, and not because of an immune system reaction but because the bacteria is not dead.

[janiedough]

Originally Posted by -jimi-

It's quite ridiculous how doctors think as soon as we develop something psychological, we don't have bodies anymore so they cannot get sick... sigh.

Low hemoglobin could be low B12 (I assume you suspected that because of other symptoms?), low iron, low folate and hypothyroid is common causes too. All this should have been tested just IMO.

Lyme antibody tests aren't so reliable, if you get one negative there is no guarantee that is correct. People have redone that test 10 times just to get a positive after 9 negatives.

Yeah, pretty much. It was the first thing that I suspected after the first 2 weeks of constant fatigue. I don't think the doctor who did the test did it correctly because he tested for it while I was taking a large amount of b12 daily and only did one single test. My thyroid levels were checked back then, though, and they were apparently normal at that time. This was over a year ago when the initial checks were done. All of my blood count tests were normal except my monocytes were high, but the doctor said that was "okay" for them to be high since the other ones were normal. (This was in Japan, and I don't trust that they really wanted to help me because I was a foreigner... At least that was the impression I got).

The one thing that I haven't mentioned to doctors yet out of fear that they would think I am crazy is that I have noticed my skin to slowly become more and more "see through." I feel like my veins are getting more and more visible below my skin. I used to only be able to see them in places like under my wrist and in the underside of my elbow, but now they are creeping everywhere from my feet, legs, torso, chest, neck, and on my face now even. The palms of my hands used to be solid, as in I could not see any veins through my skin, and now the veins are very visible. I am considering bringing it up because the veins are much more visible now than they were when I first noticed the change. I'm also tired of stupid blood vessels bursting in my eye. ugh. It heals quickly, but it is annoying. I guess I've started ranting. I should probably go to bed early...