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Bartonella skin stretch marks
Does anyone recognize this as possible Bartonella stretch marks?
She's never been pregnant or lost a significant amount of wait. She's 23 and is contemplating seeing a LLMD to rule out Lyme.
Following health issues:
Tonsillectomy, chronic knee pain, hypothyroidism, fatigue for several years, chest pain/allergies, hair loss, excess sleep, numerous colds and flu, gastro issues, sensitive to extreme temps ,irregular menses.
If anyone can describe what Bartonella stretch marks look like, and if this could be ID'd as a possibility, your help is greatly appreciated. A family member has Lyme but not the same symptoms as her, hence her hesitation to further explore.
She's never been pregnant or lost a significant amount of wait. She's 23 and is contemplating seeing a LLMD to rule out Lyme.
Following health issues:
Tonsillectomy, chronic knee pain, hypothyroidism, fatigue for several years, chest pain/allergies, hair loss, excess sleep, numerous colds and flu, gastro issues, sensitive to extreme temps ,irregular menses.
If anyone can describe what Bartonella stretch marks look like, and if this could be ID'd as a possibility, your help is greatly appreciated. A family member has Lyme but not the same symptoms as her, hence her hesitation to further explore.
Yes, I had those stretch marks with bartonella but mine were red. They can be white though. Mine disappeared after a day and then reappear every once in a while.
Good luck. If things don't work out with the current doc, reconsider getting another opinion.
Hi. I appreciate the concern, but I have every reason to believe this doctor is knowledgable and very caring and plans to stay involved. I am excited about the prospect of potentially getting my life back. It is literally the only hope I have felt in five years of sometimes nightmarish and agonizing experiences.
Excellent motto you have: "I'll get over it eventually, but...agggggh!!!"
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You say, "And right now, I'm in a high state of anxiety (which the doctor said would probably happen due in part to brain inflammation) and wondering if there's really any help for me."
It's good that your doc flagged potential side effects instead just waiting till they come up and then telling you it was part of the deal. Doesn't mean it's any easier for you to go through it, but it's good to have a communicative doc.
You say: "Is it typical for symptom flare-ups to be greater on the days when antibiotics aren't being taken? I just did my first week of MWF antibiotics (minocycline) and it seems like Tuesday and today my symptoms are much worse."
This is something to ask your doc, and don't necessarily wait till your next appointment. If it's an unexpected reaction, your doc would know that and indeed needs to know that. Please consider putting in a call to the doc's office/answering service *today* and leaving a short but specific message about why you are calling, your symptoms, and what your concerns are.
You say, "I have had a lot of symptoms over the years, but the first serious ones were all neurological in nature--so I went to a neurologist." Logical, but as you found, it can be a problem because docs tend to view a patient through the narrow focus of the doc's own specialty. And this situation is compounded by the gross misunderstanding of Lyme disease by many MDs, including especially ... neurologists. The hardest thing about Lyme (other than being ill) is, I think, understanding that there is chaos in the medical field.
When I was ill, I went through about 20 MDs in various fields, and the last one finally ran a Lyme test, since everything else had been done. The result was positive for Lyme, but the doc told me, ever so gently, that I could not possibly have Lyme. So I hear you. (But I took the positive test result and went straight to a Lyme doc, got treated, and got well.)
You say, "yesterday I was reading dissenting opinions about Lyme. I ended up on a website called 'quackwatch,' and it essentially stated with absolute certainty that there is no such thing as chronic Lyme, that doctors who treat it with antibiotics are doing serious damage to their patients' bodies and health, and that alleged Lyme patients are victims of money-grubbing doctors. Using primarily CDC information as their support. I can't lie: reading that gave me a grave feeling because at the very least, I know that this is a common opinion."
Yes, that's a common opinion in so-called mainstream medicine, because medicine is such a fragmented field of specialists that they naturally rely on other specialists, and as a result there is a very small bunch of docs who keep reinforcing the now outdated views of Lyme as rare, hard to get, and easy to cure with a couple weeks of doxycycline. (That can be true, but only very, very early in the infection, and sadly these docs do not have open minds.) Docs trust themselves, as they need to in order to make life-and-death decisions and recommendations to their patients, but when the medical world goes down the wrong path, oh boy do they do it on a big scale -- as currently with Lyme.)
Now that you are clued in about Lyme overall, you will be able to protect yourself by knowing to find a doc who thinks more progressive thoughts about Lyme.
But here's the next issue: when a field is in chaos as Lyme is, there are docs who are off the beam, and you have to keep your eyes open to that possibility. Not all LLMDs think alike, and some of them are downright strange in their views. Given how complex your infection(s) are, you may want to quietly get another opinion from another LLMD just to be sure your current doc is not off the beam.
One of those aspects could be the pulsing of antibiotics. It is a concept my LLMD did not use, so except for what I read online, I don't know what the theory is behind pulsing. Normally, antibiotics are prescribed for a length of time that will cover several reproductive cycles of the bacteria in question, because it is when reproducing that the bacterial cell wall is disrupted and the antibiotics can most readily kill the bacteria: the castle wall has been breached, and the troops can ride in to kill the bad guys. You might want to ask your doc why s/he values 'pulsing.' I have done some reading on it, but not much -- just wanted to flag it as a possible issue.
It is not unreasonable to stick with your doc's approach, but to revisit it periodically and discuss with the doc if you are not making progress you and the doc think should have achieved at a certain point. Lyme is still new to the medical world, so there is not one 'correct' approach to treatment, thus the need for vigilance as time and treatment go on.
Given how long and severely you have been impacted, a second opinion at some point may be worth doing. Lyme is the wild wild West of medicine in every way possible.
===
All that being said, I admire your courage in plowing ahead.
Your closing comment above ("I'll get over it eventually, but...agggggh!!!") is a good motto to live by, and just keep in mind that the medical world doesn't have all this figured out yet, so you are your own best watchdog. Get another opinion if you feel you need one at a certain point.
"And right now, I'm in a high state of anxiety (which the doctor said would probably happen due in part to brain inflammation) and wondering if there's really any help for me. I am praying, literally, that treatment will salvage my life. And while I have been elated all week that I actually have an explanation for what's been going on in my world all these years, I'm also just...alarmed. And grossed out. And disturbed." All very well said, and all entirely reasonable reactions.
--->>> You might try taking magnesium (Mg) supplements ... Lyme bacteria (so I read) use up Mg in their reproductive cycle, and the American diet is often deficient in Mg as well. Low Mg leaves one jumpy and scattered in thinking. I started taking Mg when I had Lyme, and I still (some years later) still take it every day. I stick with any formulation that ends in "-ate": Mg malate, aspartate, citrate, etc. One of my favorites is made up of Mg citrate, asparate and orotate ('CAO'), and another favorite is Mg malate. A good health food store or online is where I buy my stash.
(Another thought: you have mentioned having difficulty focussing at work sometimes, which is quite understandable, but you might want to consult with a labor-and-employment lawyer about your situation so that your employer is advised appropriately of your condition and you can be protected by the provisions of FMLA (Family Medical Leave Act) which can prevent an employer from terminating an ill employee. When I had Lyme, my employer knew it, and my doc had written me out to use FMLA time off when I needed it, so the employer could not legally terminate me for low hours. Dumb Employer terminated me for low hours anyway, but then the employer had to pay up for violating the law. I would rather have still been working, even part time, but Dumb Employer really messed up. It happens, and you need to protect yourself. Do look into whether you would be protected by notifying your employer according to the law.)
Please keep us posted. All good wishes -- !
=================================================
You say, "And right now, I'm in a high state of anxiety (which the doctor said would probably happen due in part to brain inflammation) and wondering if there's really any help for me."
It's good that your doc flagged potential side effects instead just waiting till they come up and then telling you it was part of the deal. Doesn't mean it's any easier for you to go through it, but it's good to have a communicative doc.
You say: "Is it typical for symptom flare-ups to be greater on the days when antibiotics aren't being taken? I just did my first week of MWF antibiotics (minocycline) and it seems like Tuesday and today my symptoms are much worse."
This is something to ask your doc, and don't necessarily wait till your next appointment. If it's an unexpected reaction, your doc would know that and indeed needs to know that. Please consider putting in a call to the doc's office/answering service *today* and leaving a short but specific message about why you are calling, your symptoms, and what your concerns are.
You say, "I have had a lot of symptoms over the years, but the first serious ones were all neurological in nature--so I went to a neurologist." Logical, but as you found, it can be a problem because docs tend to view a patient through the narrow focus of the doc's own specialty. And this situation is compounded by the gross misunderstanding of Lyme disease by many MDs, including especially ... neurologists. The hardest thing about Lyme (other than being ill) is, I think, understanding that there is chaos in the medical field.
When I was ill, I went through about 20 MDs in various fields, and the last one finally ran a Lyme test, since everything else had been done. The result was positive for Lyme, but the doc told me, ever so gently, that I could not possibly have Lyme. So I hear you. (But I took the positive test result and went straight to a Lyme doc, got treated, and got well.)
You say, "yesterday I was reading dissenting opinions about Lyme. I ended up on a website called 'quackwatch,' and it essentially stated with absolute certainty that there is no such thing as chronic Lyme, that doctors who treat it with antibiotics are doing serious damage to their patients' bodies and health, and that alleged Lyme patients are victims of money-grubbing doctors. Using primarily CDC information as their support. I can't lie: reading that gave me a grave feeling because at the very least, I know that this is a common opinion."
Yes, that's a common opinion in so-called mainstream medicine, because medicine is such a fragmented field of specialists that they naturally rely on other specialists, and as a result there is a very small bunch of docs who keep reinforcing the now outdated views of Lyme as rare, hard to get, and easy to cure with a couple weeks of doxycycline. (That can be true, but only very, very early in the infection, and sadly these docs do not have open minds.) Docs trust themselves, as they need to in order to make life-and-death decisions and recommendations to their patients, but when the medical world goes down the wrong path, oh boy do they do it on a big scale -- as currently with Lyme.)
Now that you are clued in about Lyme overall, you will be able to protect yourself by knowing to find a doc who thinks more progressive thoughts about Lyme.
But here's the next issue: when a field is in chaos as Lyme is, there are docs who are off the beam, and you have to keep your eyes open to that possibility. Not all LLMDs think alike, and some of them are downright strange in their views. Given how complex your infection(s) are, you may want to quietly get another opinion from another LLMD just to be sure your current doc is not off the beam.
One of those aspects could be the pulsing of antibiotics. It is a concept my LLMD did not use, so except for what I read online, I don't know what the theory is behind pulsing. Normally, antibiotics are prescribed for a length of time that will cover several reproductive cycles of the bacteria in question, because it is when reproducing that the bacterial cell wall is disrupted and the antibiotics can most readily kill the bacteria: the castle wall has been breached, and the troops can ride in to kill the bad guys. You might want to ask your doc why s/he values 'pulsing.' I have done some reading on it, but not much -- just wanted to flag it as a possible issue.
It is not unreasonable to stick with your doc's approach, but to revisit it periodically and discuss with the doc if you are not making progress you and the doc think should have achieved at a certain point. Lyme is still new to the medical world, so there is not one 'correct' approach to treatment, thus the need for vigilance as time and treatment go on.
Given how long and severely you have been impacted, a second opinion at some point may be worth doing. Lyme is the wild wild West of medicine in every way possible.
===
All that being said, I admire your courage in plowing ahead.
Your closing comment above ("I'll get over it eventually, but...agggggh!!!") is a good motto to live by, and just keep in mind that the medical world doesn't have all this figured out yet, so you are your own best watchdog. Get another opinion if you feel you need one at a certain point.
"And right now, I'm in a high state of anxiety (which the doctor said would probably happen due in part to brain inflammation) and wondering if there's really any help for me. I am praying, literally, that treatment will salvage my life. And while I have been elated all week that I actually have an explanation for what's been going on in my world all these years, I'm also just...alarmed. And grossed out. And disturbed." All very well said, and all entirely reasonable reactions.
--->>> You might try taking magnesium (Mg) supplements ... Lyme bacteria (so I read) use up Mg in their reproductive cycle, and the American diet is often deficient in Mg as well. Low Mg leaves one jumpy and scattered in thinking. I started taking Mg when I had Lyme, and I still (some years later) still take it every day. I stick with any formulation that ends in "-ate": Mg malate, aspartate, citrate, etc. One of my favorites is made up of Mg citrate, asparate and orotate ('CAO'), and another favorite is Mg malate. A good health food store or online is where I buy my stash.
(Another thought: you have mentioned having difficulty focussing at work sometimes, which is quite understandable, but you might want to consult with a labor-and-employment lawyer about your situation so that your employer is advised appropriately of your condition and you can be protected by the provisions of FMLA (Family Medical Leave Act) which can prevent an employer from terminating an ill employee. When I had Lyme, my employer knew it, and my doc had written me out to use FMLA time off when I needed it, so the employer could not legally terminate me for low hours. Dumb Employer terminated me for low hours anyway, but then the employer had to pay up for violating the law. I would rather have still been working, even part time, but Dumb Employer really messed up. It happens, and you need to protect yourself. Do look into whether you would be protected by notifying your employer according to the law.)
Please keep us posted. All good wishes -- !
Is it typical for symptom flare-ups to be greater on the days when antibiotics aren't being taken? I just did my first week of MWF antibiotics (minocycline) and it seems like Tuesday and today my symptoms are much worse. I had severe skin reactions on Tuesday, moderate ones throughout the week (especially yesterday/Friday), and today my "brain fog" is out of control. I feel like I did a couple of years ago when I was totally disoriented at times. I keep looking for things around the house, forget what I'm looking for, get in bed because I'm exhausted, remember, get up and then forget again. It's like I have Alzheimer's...but at least, unlike two years ago, I have some idea what's causing it. Back then I thought I was just losing my mind, and my psychiatrist suggested it was due to panic attacks. (I got lost twice going to her office, after three years of going there monthly.)
I was going to a neurologist semi-regularly for several years because it seemed like the most natural route to try to figure out what was going on with my body. I have had a lot of symptoms over the years, but the first serious ones were all neurological in nature--so I went to a neurologist. Then those gradually faded (they come and go) and were displaced by mild to *very* severe migrating joint pains that rendered me bedbound a lot of the time. Then I went to a rheumatologist, but she didn't seem very interested in my case overall. I complained about terrible pains in the bottoms of my feet, and she discovered a lump in my hand that she diagnosed as Dupuytren's contracture and that was literally the only thing she would discuss after that point...after her, I went to an allergist, who told me to avoid cats, cockroaches and dust at all costs. And that was that.
Anyway. I am a logic-minded person, and so I always like to hear all sides of most opinions (although I of course have my own biases) and yesterday I was reading dissenting opinions about Lyme. I ended up on a website called "quackwatch," and it essentially stated with absolute certainty that there is no such thing as chronic Lyme, that doctors who treat it with antibiotics are doing serious damage to their patients' bodies and health, and that alleged Lyme patients are victims of money-grubbing doctors. Using primarily CDC information as their support. I can't lie: reading that gave me a grave feeling because at the very least, I know that this is a common opinion.
On the other hand, I've discovered that these are all common symptoms of bartonella infections:
-Rashes that look exactly like stretch marks (check) but hurt/itch/burn (arrrgh!!!)
-Pain and soreness in the feet and soles of feet (check check)
-Various other rashes and skin inflammation (a constant curse for me)
-Cluster headaches (I literally almost killed myself because of the pain from these--no joke: I was ready to jump off the roof before they stopped happening)
^Without even factoring in the multiple sclerosis-type neurological symptoms I have had, which could be attributed to a lot of things, the coincidence of all of the above symptoms--in a very severe manifestation that has dramatically affected all aspects of my life--is undeniable. Just completely undeniable. Even if I one day found out I did not have Lyme (I already tested positive in 1997, though) and only bartonella, there is absolutely zero doubt in my mind that I have a bartonella infection. The listed symptoms on the nefarious, medical institution-despised Internet, and my own personal tortures, are a match made in hell and are undeniable. Completely.
And right now, I'm in a high state of anxiety (which the doctor said would probably happen due in part to brain inflammation) and wondering if there's really any help for me. I am praying, literally, that treatment will salvage my life. And while I have been elated all week that I actually have an explanation for what's been going on in my world all these years, I'm also just...alarmed. And grossed out. And disturbed. To think that I have carried an infection in my body for my entire adult life--from age 18 to 36!!!!!--feels like I'm in the Twilight Zone. Or, more appropriately, Invasion of the Body Snatchers. I can't help feeling disturbed by it. All these years I thought I was just an average, healthy person, and I've been infected with parasites. Aggggh. I'll get over it eventually, but...agggggh!!!
I was going to a neurologist semi-regularly for several years because it seemed like the most natural route to try to figure out what was going on with my body. I have had a lot of symptoms over the years, but the first serious ones were all neurological in nature--so I went to a neurologist. Then those gradually faded (they come and go) and were displaced by mild to *very* severe migrating joint pains that rendered me bedbound a lot of the time. Then I went to a rheumatologist, but she didn't seem very interested in my case overall. I complained about terrible pains in the bottoms of my feet, and she discovered a lump in my hand that she diagnosed as Dupuytren's contracture and that was literally the only thing she would discuss after that point...after her, I went to an allergist, who told me to avoid cats, cockroaches and dust at all costs. And that was that.
Anyway. I am a logic-minded person, and so I always like to hear all sides of most opinions (although I of course have my own biases) and yesterday I was reading dissenting opinions about Lyme. I ended up on a website called "quackwatch," and it essentially stated with absolute certainty that there is no such thing as chronic Lyme, that doctors who treat it with antibiotics are doing serious damage to their patients' bodies and health, and that alleged Lyme patients are victims of money-grubbing doctors. Using primarily CDC information as their support. I can't lie: reading that gave me a grave feeling because at the very least, I know that this is a common opinion.
On the other hand, I've discovered that these are all common symptoms of bartonella infections:
-Rashes that look exactly like stretch marks (check) but hurt/itch/burn (arrrgh!!!)
-Pain and soreness in the feet and soles of feet (check check)
-Various other rashes and skin inflammation (a constant curse for me)
-Cluster headaches (I literally almost killed myself because of the pain from these--no joke: I was ready to jump off the roof before they stopped happening)
^Without even factoring in the multiple sclerosis-type neurological symptoms I have had, which could be attributed to a lot of things, the coincidence of all of the above symptoms--in a very severe manifestation that has dramatically affected all aspects of my life--is undeniable. Just completely undeniable. Even if I one day found out I did not have Lyme (I already tested positive in 1997, though) and only bartonella, there is absolutely zero doubt in my mind that I have a bartonella infection. The listed symptoms on the nefarious, medical institution-despised Internet, and my own personal tortures, are a match made in hell and are undeniable. Completely.
And right now, I'm in a high state of anxiety (which the doctor said would probably happen due in part to brain inflammation) and wondering if there's really any help for me. I am praying, literally, that treatment will salvage my life. And while I have been elated all week that I actually have an explanation for what's been going on in my world all these years, I'm also just...alarmed. And grossed out. And disturbed. To think that I have carried an infection in my body for my entire adult life--from age 18 to 36!!!!!--feels like I'm in the Twilight Zone. Or, more appropriately, Invasion of the Body Snatchers. I can't help feeling disturbed by it. All these years I thought I was just an average, healthy person, and I've been infected with parasites. Aggggh. I'll get over it eventually, but...agggggh!!!
If it's helpful to you to know this, *you are sounding better*! Stronger, up for a fight to oust the bugs that ail you. This is most excellent.
As you wend your way through various possibilities and treatments, please keep in mind that you need docs who understand Lyme and its co-infections and not docs who don't believe the ailments are serious and hugely uncommon in the population.
I say this because I wince when I see the word 'neurologist' -- too many (even most?) of them just don't understand Lyme and don't care to try. If you have found MDs you think understand all this and what you have been through and are up against, then of course stick with them as long as it's working for you. But if you get any inkling that these docs are not thinking Big Thoughts about your situation, then *please* quietly slink off and get a second opinion from a Lyme-type doc.
My Lyme doc was (still is) an immunologist by training, and I think that aided him vastly in putting together the pieces of Lyme and its co-infections such as you have. That is the kind of doc I wish for you.
Even Lyme docs have their blind spots, due to the complexity of these ailments and the confusion in the medical community, and if you have any inkling that a doc is wearing blinders, then it's a sign to quietly get another opinion and possible new direction. MDs are of course really smart people, but too often they lack imagination for what they do not know already.
You have fought -- and continue to fight -- so hard and deserve the best support you can find from your docs. You sound excited about these developments, as you should in making such progress. Please keep posting about how you are doing -- we are rooting for you, and your story may well help others who suffer as you have.
Hurrah!! Will wait for the next installment. You go!
As you wend your way through various possibilities and treatments, please keep in mind that you need docs who understand Lyme and its co-infections and not docs who don't believe the ailments are serious and hugely uncommon in the population.
I say this because I wince when I see the word 'neurologist' -- too many (even most?) of them just don't understand Lyme and don't care to try. If you have found MDs you think understand all this and what you have been through and are up against, then of course stick with them as long as it's working for you. But if you get any inkling that these docs are not thinking Big Thoughts about your situation, then *please* quietly slink off and get a second opinion from a Lyme-type doc.
My Lyme doc was (still is) an immunologist by training, and I think that aided him vastly in putting together the pieces of Lyme and its co-infections such as you have. That is the kind of doc I wish for you.
Even Lyme docs have their blind spots, due to the complexity of these ailments and the confusion in the medical community, and if you have any inkling that a doc is wearing blinders, then it's a sign to quietly get another opinion and possible new direction. MDs are of course really smart people, but too often they lack imagination for what they do not know already.
You have fought -- and continue to fight -- so hard and deserve the best support you can find from your docs. You sound excited about these developments, as you should in making such progress. Please keep posting about how you are doing -- we are rooting for you, and your story may well help others who suffer as you have.
Hurrah!! Will wait for the next installment. You go!
Jackie, thanks. I am keeping track of all symptoms on a calendar.
Today represents the third day of anitibiotic treatment (only minocycline so far--next week I add another--MWF), and the end of the first work week on treatment.
A few details and overall impression:
Monday night: took first antibiotic, went to bed.
Tuesday: Woke up with a KILLER headache that improved after I took Tylenol. At 9:30 a.m., both of my legs got hot and turned bright red and inflamed (which happens a lot, but usually in the afternoon--I have lots of strange skin issues). The stretch marks all over my body burned, essentially like a bad sunburn. That has happened before on and off, usually for about a week at a time before abating for 2-3 weeks. The pain became more intense throughout the day, and when I got home I took photos of some--they turned pink around the edges and little blood-red pin-prick sized dots appeared. Walking to work and back, I noticed my left knee feels stiff--something that was a big problem a couple of years ago but mostly has improved. So it seems this symptom in particular is a result of antibiotics, because it's been a long time since it happened. It's hard to describe exactly how this feels...there's no pain, but it's as if there is some invisible resistance to walking forward, sort of like walking through a Chuck E. Cheese-type pit full of plastic balls...there's just a little resistance, and you have to step carefully to avoid tripping.
Weds: I woke up at 3:30 a.m. and simply could not sleep. It's hard to explain, but it actually felt as if I was unable to concentrate well enough to sleep (??)...but that could be explained as simple anxiety, I suppose. Anyway, I stopped trying to sleep. By 8:00 or so in the morning, my skin was sensitive everywhere. The stretch mark scars were burning like they were on fire--really. It was much worse when I showered. It was a long day because of the sleeplessness. I took 1/2 a clonazepam to make sure I slept that night, and I slept well--until 6am, which is later than usual for me.
Thurs: Woke up later than usual without any pain; however, my skin was (is) sensitive all over. All my joints felt stiff and actually crackled--this, too, has happened to me for years on and off. I suppose it's due to inflammation, but I really don't know. Either way, the only really bad symptom yesterday--and it was bad--was my mind. Throughout the work day, I was just basically...dumb. I forgot what I was saying midway through sentences. I stared at my computer for hours trying to figure out what to start doing or what to keep doing. When people interrupted me, I was simply lost. I had to interview a job candidate, and I heard myself asking a question that was a little more candid that I normally would ask. If I were pressed to explain what was going on, I'd say my whole body, including my brain, is just in some state of swollen shock. That's how it feels.
Friday/today: It's morning, and I'm moving slooowwwwwwwly. I slept all night, but I am EXHAUSTED. Really, really tired. This isn't new to me, but it hasn't happened since Christmastime (it's now mid-March). I'm already late for work, but I haven't been able to work up the energy to get up and shower. I did make coffee as soon as I woke up, and with every step of my right foot, it felt like my bones were being crushed--like they are bruised deep inside. This happened about two years ago, and I actually saw a rheumatologist about it, but she wasn't concerned. She thought it was due to exercise or strain, but I was actually completely sedentary at that time because of fatigue. Now I know that foot pain is yet another symptom of bartonella.
Which is why I am posting this here: I've read quite a lot more about bartonella at this point, and EVERY freaking symptom has affected my life for years now. Especially:
-Stretch marks (bartonella rashes)--and I'm 5'11" and weigh 153lb. Hardly obese.
-Neurological symptoms--have devastated my life over the past 5 years
-Migrating joint pain--for about the past two years...sometimes there's 0 pain, and sometimes I'm bed-bound.
--Foot pain--Specifically, the pain feels like it is in the bones in the center of the foot, and the pain is felt only when I step on it/pressure is applied. Sometimes the skin on the sole of my foot or feet is so sensitive it stings to touch, too, but that's not a problem right now.
--One thing I just discovered, which I now believe is VERY significant, so anyone reading this, pay attention: Last september, when I had my first disabling vertigo attack (and didn't know what had happened), my blood test revealed an elevated creatinine level...which can reveal liver disease. My regular doctor was concerned, but said that it could have been because I was dehydrated since I was so stunned by the vertigo. She told me to drink lots of water before the next blood test, and I did, and the test was in the high-normal range. Well, it turns out high liver-related enzymes are lab-based evidence of bartonella--but it was not suspected. So if you have lots of stretch marks and your creatinine and/or EOSIN% (which can indicate a parasitic infection or inflammation) are high, suspect bartonella. My doctor overlooked both because otherwise my blood was normal.
Last symptom I just found out can be caused by bartonella, and it's a big one: CLUSTER HEADACHES. I had a cluster of cluster headaches in November 2012. I will be honest: they are called suicide headaches for a reason. From the patient's perspective, they aren't headaches at all, but rather SEVERE, SHARP pain located right in the center of the eyeball. The manifestation is very specific: first a dull ache that feels like a toothache; by the time you feel it, the pain is becoming so significant as to be disabling. Your nose starts to run, and within a minute or two (no joke, no exaggeration), it feels like someone has shoved a live electrical wire into the middle of your eyeball and is ramping up the electricity. When people have migraines, they usually want to be completely still and silent in the dark; when people have cluster headaches, they inevitably try to outrun it--literally...anyone with a cluster headache can't stop running around and moving and wiggling and squirming.
My neurologist diagnosed the cluster headaches and said there's no real known cause and no treatment that works very effectively, and that neurologists think cluster headaches may be the worst pain that can possibly be felt (women who have had children say the pain far exceeds that of childbirth--I can't attest to that). Anyway, the neurologist gave me his sympathies and told me to call him when the next cluster starts--because he said it is extremely rare that a person would ever get just one cluster...they come for weeks/months/years at a time, go away, and then come back again for unknown reasons. And they occur usually at the same time of day every day in clusters. Does this sound familiar to anyone...? A lot of Lyme symptoms follow similar natural cyclical rhythms. And cluster headaches can be caused by bartonella.
I think I have found the source of ALL of my maladies and I pray, pray, pray that this treatment is going to get it under control.
All these years, I've been pretty sure that eventually I was going to have an MRI and there it would be: evidence of multiple sclerosis, finally. I never thought that any of this would be attributed to a freaking parasite in my body--or that my stretch marks would prove to be a symptom of an infection, and not just "cursed" skin. Reality is so bizarre and unexpected sometimes.
Today represents the third day of anitibiotic treatment (only minocycline so far--next week I add another--MWF), and the end of the first work week on treatment.
A few details and overall impression:
Monday night: took first antibiotic, went to bed.
Tuesday: Woke up with a KILLER headache that improved after I took Tylenol. At 9:30 a.m., both of my legs got hot and turned bright red and inflamed (which happens a lot, but usually in the afternoon--I have lots of strange skin issues). The stretch marks all over my body burned, essentially like a bad sunburn. That has happened before on and off, usually for about a week at a time before abating for 2-3 weeks. The pain became more intense throughout the day, and when I got home I took photos of some--they turned pink around the edges and little blood-red pin-prick sized dots appeared. Walking to work and back, I noticed my left knee feels stiff--something that was a big problem a couple of years ago but mostly has improved. So it seems this symptom in particular is a result of antibiotics, because it's been a long time since it happened. It's hard to describe exactly how this feels...there's no pain, but it's as if there is some invisible resistance to walking forward, sort of like walking through a Chuck E. Cheese-type pit full of plastic balls...there's just a little resistance, and you have to step carefully to avoid tripping.
Weds: I woke up at 3:30 a.m. and simply could not sleep. It's hard to explain, but it actually felt as if I was unable to concentrate well enough to sleep (??)...but that could be explained as simple anxiety, I suppose. Anyway, I stopped trying to sleep. By 8:00 or so in the morning, my skin was sensitive everywhere. The stretch mark scars were burning like they were on fire--really. It was much worse when I showered. It was a long day because of the sleeplessness. I took 1/2 a clonazepam to make sure I slept that night, and I slept well--until 6am, which is later than usual for me.
Thurs: Woke up later than usual without any pain; however, my skin was (is) sensitive all over. All my joints felt stiff and actually crackled--this, too, has happened to me for years on and off. I suppose it's due to inflammation, but I really don't know. Either way, the only really bad symptom yesterday--and it was bad--was my mind. Throughout the work day, I was just basically...dumb. I forgot what I was saying midway through sentences. I stared at my computer for hours trying to figure out what to start doing or what to keep doing. When people interrupted me, I was simply lost. I had to interview a job candidate, and I heard myself asking a question that was a little more candid that I normally would ask. If I were pressed to explain what was going on, I'd say my whole body, including my brain, is just in some state of swollen shock. That's how it feels.
Friday/today: It's morning, and I'm moving slooowwwwwwwly. I slept all night, but I am EXHAUSTED. Really, really tired. This isn't new to me, but it hasn't happened since Christmastime (it's now mid-March). I'm already late for work, but I haven't been able to work up the energy to get up and shower. I did make coffee as soon as I woke up, and with every step of my right foot, it felt like my bones were being crushed--like they are bruised deep inside. This happened about two years ago, and I actually saw a rheumatologist about it, but she wasn't concerned. She thought it was due to exercise or strain, but I was actually completely sedentary at that time because of fatigue. Now I know that foot pain is yet another symptom of bartonella.
Which is why I am posting this here: I've read quite a lot more about bartonella at this point, and EVERY freaking symptom has affected my life for years now. Especially:
-Stretch marks (bartonella rashes)--and I'm 5'11" and weigh 153lb. Hardly obese.
-Neurological symptoms--have devastated my life over the past 5 years
-Migrating joint pain--for about the past two years...sometimes there's 0 pain, and sometimes I'm bed-bound.
--Foot pain--Specifically, the pain feels like it is in the bones in the center of the foot, and the pain is felt only when I step on it/pressure is applied. Sometimes the skin on the sole of my foot or feet is so sensitive it stings to touch, too, but that's not a problem right now.
--One thing I just discovered, which I now believe is VERY significant, so anyone reading this, pay attention: Last september, when I had my first disabling vertigo attack (and didn't know what had happened), my blood test revealed an elevated creatinine level...which can reveal liver disease. My regular doctor was concerned, but said that it could have been because I was dehydrated since I was so stunned by the vertigo. She told me to drink lots of water before the next blood test, and I did, and the test was in the high-normal range. Well, it turns out high liver-related enzymes are lab-based evidence of bartonella--but it was not suspected. So if you have lots of stretch marks and your creatinine and/or EOSIN% (which can indicate a parasitic infection or inflammation) are high, suspect bartonella. My doctor overlooked both because otherwise my blood was normal.
Last symptom I just found out can be caused by bartonella, and it's a big one: CLUSTER HEADACHES. I had a cluster of cluster headaches in November 2012. I will be honest: they are called suicide headaches for a reason. From the patient's perspective, they aren't headaches at all, but rather SEVERE, SHARP pain located right in the center of the eyeball. The manifestation is very specific: first a dull ache that feels like a toothache; by the time you feel it, the pain is becoming so significant as to be disabling. Your nose starts to run, and within a minute or two (no joke, no exaggeration), it feels like someone has shoved a live electrical wire into the middle of your eyeball and is ramping up the electricity. When people have migraines, they usually want to be completely still and silent in the dark; when people have cluster headaches, they inevitably try to outrun it--literally...anyone with a cluster headache can't stop running around and moving and wiggling and squirming.
My neurologist diagnosed the cluster headaches and said there's no real known cause and no treatment that works very effectively, and that neurologists think cluster headaches may be the worst pain that can possibly be felt (women who have had children say the pain far exceeds that of childbirth--I can't attest to that). Anyway, the neurologist gave me his sympathies and told me to call him when the next cluster starts--because he said it is extremely rare that a person would ever get just one cluster...they come for weeks/months/years at a time, go away, and then come back again for unknown reasons. And they occur usually at the same time of day every day in clusters. Does this sound familiar to anyone...? A lot of Lyme symptoms follow similar natural cyclical rhythms. And cluster headaches can be caused by bartonella.
I think I have found the source of ALL of my maladies and I pray, pray, pray that this treatment is going to get it under control.
All these years, I've been pretty sure that eventually I was going to have an MRI and there it would be: evidence of multiple sclerosis, finally. I never thought that any of this would be attributed to a freaking parasite in my body--or that my stretch marks would prove to be a symptom of an infection, and not just "cursed" skin. Reality is so bizarre and unexpected sometimes.
PS -- are you keeping notes every day to record what meds you took when, what you eat when, what symptoms you are having (like the striations), and overall how you are feeling? It can be as detailed as you like, and it's amazing what patterns you the doc will notice when reading through your notes -- it's the kind of insight that is hard to convey to a doc when the previous weeks since the last appointment are a bit of a blur.
When I had Lyme, my brain was on vacation and I couldn't remember what I had for lunch today, much less how I felt last week. It sounds obsessive to keep notes like that, but my Lyme doc liked them -- I would take my binder notes to each appointment, and before even seeing me, the doc would spend a few minutes scanning through the blow-by-blow events since the last appointment.
For example, I had columns for date/time; what meds I took when; what I ate ("cereal and milk for breakfast"); how well or badly I slept ("slept through the night" or "woke repeatedly"); how much physical activity I had ("20 min. walk, not as tired as after yesterday's walk"); and anything else that caught my notice. I kept my summary on the computer, so it was pretty easy to type in a few words as I walked by the desk and then print it out and stick it in a folder or binder to carry to the doc appointment.
My memory was toast in general (due to Lyme and the resulting fatigue), and the chart helped me *and* the doc track improvements, plateaus, problems, whatever. Often I would not see a trend, but the doc would.
Some docs don't like notes like that ("just tell me how you've been"), but with Lyme, memory is often a tricky thing.
Just a thought, if it's helpful. It also helped me realize that I wasn't losing my mind and my memories, it was just that Lyme messed with the 'filing cabinet' that my brain used to be. When treatment was done, my brain began to function fully again. fwiw.
When I had Lyme, my brain was on vacation and I couldn't remember what I had for lunch today, much less how I felt last week. It sounds obsessive to keep notes like that, but my Lyme doc liked them -- I would take my binder notes to each appointment, and before even seeing me, the doc would spend a few minutes scanning through the blow-by-blow events since the last appointment.
For example, I had columns for date/time; what meds I took when; what I ate ("cereal and milk for breakfast"); how well or badly I slept ("slept through the night" or "woke repeatedly"); how much physical activity I had ("20 min. walk, not as tired as after yesterday's walk"); and anything else that caught my notice. I kept my summary on the computer, so it was pretty easy to type in a few words as I walked by the desk and then print it out and stick it in a folder or binder to carry to the doc appointment.
My memory was toast in general (due to Lyme and the resulting fatigue), and the chart helped me *and* the doc track improvements, plateaus, problems, whatever. Often I would not see a trend, but the doc would.
Some docs don't like notes like that ("just tell me how you've been"), but with Lyme, memory is often a tricky thing.
Just a thought, if it's helpful. It also helped me realize that I wasn't losing my mind and my memories, it was just that Lyme messed with the 'filing cabinet' that my brain used to be. When treatment was done, my brain began to function fully again. fwiw.
Well said; well said. If it gets more annoying than you think it should be, call the doc and report the specifics so adjustments can perhaps be made without hampering progress overall. Tally ho!
I took one minocycline pill last night...and I'm breaking out like crazy all over. Some of the white "stretch marks" on my knee have turned pink and painful, and the ones all over my torso are burning, so I assume that's happening with all of them. Little puffy white rashes have also appeared on my arms throughout the day. I'm not sure what's happening, but I'm hoping that's the little critters running around in a panic from the attack.
This is all so equally fascinating and disturbing.
This is all so equally fascinating and disturbing.
Hurrah! There is a lot of stuff on the net about bartonella rash, and from a quick read it looks as I would expect: appropriate antibiotic treatment will take care of the situation. Good for you for pursuing a diagnosis -- and do keep us posted!
Hi all,
An update that may be helpful for someone out there. I FINALLY went to see an LLMD yesterday after five years of neurological testing, etc. The doctor reviewed my labs and symptoms, and ordered seven vials worth of blood labs, etc. This doctor feels certain based on my history (I was diagnosed w/ Lyme in 1997 and evidently undermedicated for it), my symptoms (neuro & rheumatological), some odd things in my past blood tests (high EOSIN% in 2010) that were previously overlooked/considered insignificant...and the stretch marks. I am a 36 year-old male, 5'11", 153lb, and I am absolutely covered in stretch marks from my shoulders to my knees...this doctor looked at them and said, without any doubt, they are batronella rashes, not stretch marks. Which is, to be honest, very, very hard for me to accept as a reality because this scarring of my body has created extraordinary stress and has seriously affected my mental health and well being for many, many years...so all I can say is that this news feels like a miracle and a curse at the same time, but I'm trying to see it as fascinating new information instead of getting angry about what I can't change. My body is evidently crawling with parasites, and I'm praying (I'm not a praying person, but I am literally praying now) that this is actually treatable and I might get my life, my health, and even some normalcy of my skin back.
If you think you may have bartonella based on scars/rashes, and your dermatologist just says it's stretch marks, find a Lyme specialist and get a consultation.
As I said, I have a hard time believing that these may be reversible at all, but I will keep everyone updated as my treatment proceeds.
An update that may be helpful for someone out there. I FINALLY went to see an LLMD yesterday after five years of neurological testing, etc. The doctor reviewed my labs and symptoms, and ordered seven vials worth of blood labs, etc. This doctor feels certain based on my history (I was diagnosed w/ Lyme in 1997 and evidently undermedicated for it), my symptoms (neuro & rheumatological), some odd things in my past blood tests (high EOSIN% in 2010) that were previously overlooked/considered insignificant...and the stretch marks. I am a 36 year-old male, 5'11", 153lb, and I am absolutely covered in stretch marks from my shoulders to my knees...this doctor looked at them and said, without any doubt, they are batronella rashes, not stretch marks. Which is, to be honest, very, very hard for me to accept as a reality because this scarring of my body has created extraordinary stress and has seriously affected my mental health and well being for many, many years...so all I can say is that this news feels like a miracle and a curse at the same time, but I'm trying to see it as fascinating new information instead of getting angry about what I can't change. My body is evidently crawling with parasites, and I'm praying (I'm not a praying person, but I am literally praying now) that this is actually treatable and I might get my life, my health, and even some normalcy of my skin back.
If you think you may have bartonella based on scars/rashes, and your dermatologist just says it's stretch marks, find a Lyme specialist and get a consultation.
As I said, I have a hard time believing that these may be reversible at all, but I will keep everyone updated as my treatment proceeds.
I just searched for -- lyme disease striations --
and got some interesting links. The first one in the search results is by SchallerMD, who is well known in the Lyme arena. fwiw, more data points for you.
despair not.
and got some interesting links. The first one in the search results is by SchallerMD, who is well known in the Lyme arena. fwiw, more data points for you.
despair not.
Holy. Crap.
My entire body, from my abdomen to my shoulders, flanks/sides, hips, buttocks, and even my freaking knees have stretch marks that look like exactly what you posted. I am a 5'11" male who at my heaviest weighed around 175 (never obese by any measure)--I'm typically around 160. I've always wondered why I am so cursed.
Jackie will recognize me from another post about potentially having Lyme. Agggh.
My entire body, from my abdomen to my shoulders, flanks/sides, hips, buttocks, and even my freaking knees have stretch marks that look like exactly what you posted. I am a 5'11" male who at my heaviest weighed around 175 (never obese by any measure)--I'm typically around 160. I've always wondered why I am so cursed.
Jackie will recognize me from another post about potentially having Lyme. Agggh.
Thanks Jackie! She has contacted Canlyme and The Murakami Centre to get names of LLND's in her area - 2 great resources for Canadians.
There is a Canadian Lyme disease association, just search for 'canlyme' and you'll find it. Organizations like that can have quite good information on finding a Lyme specialist.
Thanks Ricobord, very informative. She is contacting Canlyme.com to request a LLND in her area. She lives in BC and unfortunately there are no LLMDs there, and GPs there don't treat with longterm antibiotics. But in BC naturopaths can legally write prescriptions.
Is there a blood test that has better accuracy rates to show Chronic Lyme Disease?
Is there a blood test that has better accuracy rates to show Chronic Lyme Disease?
Based on symptoms alone and no diagnosis so far, I highly recommend a visit to an LLMD. The stretch marks really do look like a Bartonella rash, although I have a stubborn case of Bart and have never had the rash.
She could have both Bart and Lyme or even just Bart. There's a lot of overlap and symptoms. But given the irregular menses, it sounds like her hormones are out of whack. I think that's more likely to be from Lyme.
Different people have different presentations of Lyme. Different species, different combinations of tick borne diseases, different immune systems all can result in a different disease progression. The early studiers of Lyme did us all a terrible disservice when they got overly focuses on the rheumatic symptoms of Lyme, dismissing "neuro" Lyme as extremely rare in the U.S.
Some people start out with chronic fatigue, shortness of breath, migraines, or GI distress, nothing that waves a red flag and says, "I have Lyme Disease." I've never had joint pain or swelling or muscle pain. But I've had plenty of neuro symptoms, GI symptoms, rib pain, and I figured out that every single organ in my body has been affected by one or more Lyme, Bartonella, and Babesia.
The secondary and tertiary effects on the body serve to confuse doctors even more. I've heard stories of patients with abnormal liver enzymes, thyroid deficiency, chronic diarrhea, hormonal imbalances, or vision problems who've been told "Lyme doesn't do that." Oh, yes it does!
Every symptom you mention can be caused by Lyme and possibly Bartonella as well. Given her long term symptoms, if it is Lyme, she'll probably test false negative due to low antibodies. A LLMD is her best hope.
She could have both Bart and Lyme or even just Bart. There's a lot of overlap and symptoms. But given the irregular menses, it sounds like her hormones are out of whack. I think that's more likely to be from Lyme.
Different people have different presentations of Lyme. Different species, different combinations of tick borne diseases, different immune systems all can result in a different disease progression. The early studiers of Lyme did us all a terrible disservice when they got overly focuses on the rheumatic symptoms of Lyme, dismissing "neuro" Lyme as extremely rare in the U.S.
Some people start out with chronic fatigue, shortness of breath, migraines, or GI distress, nothing that waves a red flag and says, "I have Lyme Disease." I've never had joint pain or swelling or muscle pain. But I've had plenty of neuro symptoms, GI symptoms, rib pain, and I figured out that every single organ in my body has been affected by one or more Lyme, Bartonella, and Babesia.
The secondary and tertiary effects on the body serve to confuse doctors even more. I've heard stories of patients with abnormal liver enzymes, thyroid deficiency, chronic diarrhea, hormonal imbalances, or vision problems who've been told "Lyme doesn't do that." Oh, yes it does!
Every symptom you mention can be caused by Lyme and possibly Bartonella as well. Given her long term symptoms, if it is Lyme, she'll probably test false negative due to low antibodies. A LLMD is her best hope.
Yes it's the Bart's rash. I have them too. It sometimes is red and sometimes like that. I also have lesions all over.
"A family member has Lyme but not the same symptoms as her, hence her hesitation to further explore."
Sorry to hear of this -- and yes, I would see a knowledgeable doc. I didn't have these symptoms, BUT Lyme and its coinfections show differently in different people for all kinds of reasons.
Even if it's not Lyme, it's worth finding out what it is and what to do about it. Let us know -- and best wishes!
Sorry to hear of this -- and yes, I would see a knowledgeable doc. I didn't have these symptoms, BUT Lyme and its coinfections show differently in different people for all kinds of reasons.
Even if it's not Lyme, it's worth finding out what it is and what to do about it. Let us know -- and best wishes!
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