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Lyme disease and permanent damage!!!
Hello, I was just wondering what were the chances of Lyme disease making permanent brain damage after only a 6 months of having it. I am having symptoms of lower concentration, minor head twitching, and nerve tingling on face legs and arms. If I get treated with antibiotics now, will it be too late to reverse the damage?? Please help I am scared!!!
To ease your mind a little, the brain is a highly adaptive organ. Got some damage in the place where certain engrams would be stored, no problem, it'll store them in an area that is still functional. I've been packing around my problem since I was very young, however, I was still near the top of my class in high school and I was able to go to college when I was in my 30s and maintain the average my nutrition with biological science degree required. I never got that degree, mostly because what the program considered important, and what I considered important were two different things. I did however learn a lot in the seven floors of library and the 1990s internet. Now, it's been so long, I've forgotten a lot of it! Bottom line, life will go on.
Welcome back --
Others here can speak to herbs and supplements, but if you have Lyme and it's been more than a short while that you have been infected, doxy may not work. The reason is that a relatively short time after the initial infection, so I read, the Lyme bacteria migrate away from where the immune system would normally find and kill them, and the bacteria go hide in areas of low blood flow (like cartilage), where the immune system also doesn't reach easily, and the bacteria also create slimy shields called 'biofilms', which the immune system doesn't penetrate.
Why is this a problem? Because doxycycline doesn't go into the cartilage or into the biofilms. What it can't find, it can't kill.
There is not a magic date after infection when this hiding begins, but if you've been bitten more than very very recently, then other meds (besides just doxy) are needed to penetrate to where the bacteria are hiding.
Most docs don't know or believe this, but a Lyme specialist will, and will likely prescribe additional meds at the same time that will break open the biofilms and THEN kill the Lyme bacteria inside. Only a Lyme specialist understands this.
Others here may suggest herbs that may break open the biofilms, but my doc was an all-antibiotics kind of guy, and it worked for me, so that's where I would go again.
When you're fully treated and well, the brain fog should go away, in my experience.
Others here can speak to herbs and supplements, but if you have Lyme and it's been more than a short while that you have been infected, doxy may not work. The reason is that a relatively short time after the initial infection, so I read, the Lyme bacteria migrate away from where the immune system would normally find and kill them, and the bacteria go hide in areas of low blood flow (like cartilage), where the immune system also doesn't reach easily, and the bacteria also create slimy shields called 'biofilms', which the immune system doesn't penetrate.
Why is this a problem? Because doxycycline doesn't go into the cartilage or into the biofilms. What it can't find, it can't kill.
There is not a magic date after infection when this hiding begins, but if you've been bitten more than very very recently, then other meds (besides just doxy) are needed to penetrate to where the bacteria are hiding.
Most docs don't know or believe this, but a Lyme specialist will, and will likely prescribe additional meds at the same time that will break open the biofilms and THEN kill the Lyme bacteria inside. Only a Lyme specialist understands this.
Others here may suggest herbs that may break open the biofilms, but my doc was an all-antibiotics kind of guy, and it worked for me, so that's where I would go again.
When you're fully treated and well, the brain fog should go away, in my experience.
Hey, haven't been here in awhile. I talked to my nurse practitioner about my situation, and convinced her that I may have Lyme, so she is going to start me on doxycycline 200mg twice a day for around a month I think. Am I on the right track for anything?
And also, are there any herbal supplements that I can take with the antibiotics that will help relieve my brain fog? Thanks
And also, are there any herbal supplements that I can take with the antibiotics that will help relieve my brain fog? Thanks
I don't recall having trouble sleeping, but I'm lucky that I have always slept like the proverbial log.
When I had Lyme and before I started taking the Mg, I felt stressed and anxious in ways that weren't normal for me, but I didn't know why it was. Then when I did start taking Mg, I found it relaxed me and made everything more tolerable. Try it for a week.
When I had Lyme and before I started taking the Mg, I felt stressed and anxious in ways that weren't normal for me, but I didn't know why it was. Then when I did start taking Mg, I found it relaxed me and made everything more tolerable. Try it for a week.
Thanks, and on your symptoms matter, ik everybody is different, but did you also have trouble sleeping? Because that has been the norm for almost 2 months for me now?
Magnesium.
The Lyme bacteria use up magnesium (Mg) in their reproductive process, which leaves us humans deficient, on top of the American diet often being deficient in Mg, so I read.
===>>> Any variety ending in "-ate" is supposed to be most absorbable: Mg malate, orotate, aspartate, etc.
I have read that blends of Mg and calcium (one common brand is called Cal-Mag) do not work well, dunno why, maybe the variety of Mg is substandard, dunno.
So read the labels. Any good drugstore or healthfood store will likely have something, just ask at the counter. Or you can buy it online.
Low Mg levels often result in anxiety and twitching and brain fog, on top of the Lyme giving symptoms too. Mg helped me a lot, and I still take it as a supplement every day.
Rule of thumb: if you get diarrhea, back off on the dosage. I'm very sensitive to many meds etc, and I've never had a problem that way.
Go for it! And you'll sleep like a baby. Milk is full of Mg, and when a baby gets floppy and sleeps like a log after a bottle of warm milk, it's partly the Mg.
The Lyme bacteria use up magnesium (Mg) in their reproductive process, which leaves us humans deficient, on top of the American diet often being deficient in Mg, so I read.
===>>> Any variety ending in "-ate" is supposed to be most absorbable: Mg malate, orotate, aspartate, etc.
I have read that blends of Mg and calcium (one common brand is called Cal-Mag) do not work well, dunno why, maybe the variety of Mg is substandard, dunno.
So read the labels. Any good drugstore or healthfood store will likely have something, just ask at the counter. Or you can buy it online.
Low Mg levels often result in anxiety and twitching and brain fog, on top of the Lyme giving symptoms too. Mg helped me a lot, and I still take it as a supplement every day.
Rule of thumb: if you get diarrhea, back off on the dosage. I'm very sensitive to many meds etc, and I've never had a problem that way.
Go for it! And you'll sleep like a baby. Milk is full of Mg, and when a baby gets floppy and sleeps like a log after a bottle of warm milk, it's partly the Mg.
Thanks for your advice, what would you advise me do for positivity? I am going through a lot of anxiety right now because of my neurological symptoms and they aren't even that bad? Are there any supplements or or dietary changes I will have to make? Please help, you are honestly like my best friend right now since you have been through what I am going through.
ILADS is based in Bethesda MD, so I don't think you were talking with them.
Maybe you were talking with TXLDA, Texas Lyme Disease Assn. They have a page on Facebook that may have useful information.
Also google for -- Texas LLMD -- and you will get lots of hits for various organizations in Texas.
How to pay for treatment?
-- Working
-- Savings
-- Credit cards/lines
-- Family and friends
The charities I am aware of are called LymeTAP and LymeLight Foundation. I don't know what their requirements are.
Maybe you were talking with TXLDA, Texas Lyme Disease Assn. They have a page on Facebook that may have useful information.
Also google for -- Texas LLMD -- and you will get lots of hits for various organizations in Texas.
How to pay for treatment?
-- Working
-- Savings
-- Credit cards/lines
-- Family and friends
The charities I am aware of are called LymeTAP and LymeLight Foundation. I don't know what their requirements are.
Hey, so I called the ILADS association of north Texas, and they reffered me to only one doc in the Dallas area!! He also said that there would be a minimum wait of 60 days and that it would cost between 500-600 dollars up front just to talk to him for one hour!! How would you get assistance paying for this?
I would think tests would be ordered, because Lyme often comes along with other infections from the same ticks (bartonella, babesiosis, ehrlichiosis, and a few more) that need to be tested for -- the symptoms of these infections tend to overlap in some respects, but the meds needed for each one are often different from each other, so knowing exactly what infection(s) you have is important. Therefore blood tests.
Without knowing anything about specific LLMDs in Texas, I'd be surprised if there is only one LLMD in Dallas. I gather that the medical establishment in TX is not that tuned in to Lyme, so the LLMDs may stay under the radar to avoid hassles from the state and local medical boards.
Therefore the LLMDs may not be easy to find, as in not on billboards ("WE TREAT LYME!") or on their websites, but they are out there. That's why referrals from organizations mentioned above could be helpful. It's what I would do, unless you have a friend with Lyme who is happy with their doc.
Without knowing anything about specific LLMDs in Texas, I'd be surprised if there is only one LLMD in Dallas. I gather that the medical establishment in TX is not that tuned in to Lyme, so the LLMDs may stay under the radar to avoid hassles from the state and local medical boards.
Therefore the LLMDs may not be easy to find, as in not on billboards ("WE TREAT LYME!") or on their websites, but they are out there. That's why referrals from organizations mentioned above could be helpful. It's what I would do, unless you have a friend with Lyme who is happy with their doc.
Thanks, I have located what seems to be the only LLMD in the Dallas area, so if nothing comes upon the neurologist and rheumatologist, I will see him asap.
I have also emailed the ILADS email you gave me earlier in this thread, and have gotten a response from them already.
Do LLMD's need any test results in order to treat you, or can they diagnose based solely on symptoms?
I have also emailed the ILADS email you gave me earlier in this thread, and have gotten a response from them already.
Do LLMD's need any test results in order to treat you, or can they diagnose based solely on symptoms?
I'm not medically trained, so can't tell you the rights-and-wrongs of what doc to see, but since you ask ...
... rheumaologists and neurologists are two types of docs who have a reputation for NOT understanding Lyme (tho they think they do).
You may get lucky with one of these docs if he's gone rogue, but unless you got these docs' names from a Lyme association like TXLDA or another one I posted somewhere here recently, it's iffy how the doc will view the possibility of Lyme and how the doc would treat it.
I see in earlier posts on this thread that TXLDA and NTX were both mentioned as possible sources of an LLMD -- if that is where you got the rheumatologist and neurologist names, then they may have seen the light about Lyme, but if you got the names elsewhere, then ... maybe not so much.
You could give it a try, esp if they are in your insurance plan and therefore less expensive, but keep an open mind about the results. Good luck!
... rheumaologists and neurologists are two types of docs who have a reputation for NOT understanding Lyme (tho they think they do).
You may get lucky with one of these docs if he's gone rogue, but unless you got these docs' names from a Lyme association like TXLDA or another one I posted somewhere here recently, it's iffy how the doc will view the possibility of Lyme and how the doc would treat it.
I see in earlier posts on this thread that TXLDA and NTX were both mentioned as possible sources of an LLMD -- if that is where you got the rheumatologist and neurologist names, then they may have seen the light about Lyme, but if you got the names elsewhere, then ... maybe not so much.
You could give it a try, esp if they are in your insurance plan and therefore less expensive, but keep an open mind about the results. Good luck!
I have been referred to a rheumatologist and a neurologist for all these symptoms I am having, and I will definitely bring up Lyme disease as my main concern. Are these steps in the right direction? Because I don't want to have to go in circles forever haha
It's not unusual for Lyme docs not to take insurance -- dealing with insurance companies who don't 'believe' in Lyme is a hassle, and the doc would have to pay a billing staff to handle the back-and-forth with the insurance companies, thus raising the rates for everyone (including those without insurance.)
I don't know the going rate for an LLMD in Texas, but $250/hour is not unheard of in California. The good news is that if you pay the doc yourself, you'll get a bill from the doc to submit to your insurance company, who usually reimburses at their usual rates, so you get back a lot of what you paid the doc.
You can call the doc's office and ask. They'll tell you. And if you really can't afford it, there are ways to get assistance. Let us know if you need the details on that.
I don't know the going rate for an LLMD in Texas, but $250/hour is not unheard of in California. The good news is that if you pay the doc yourself, you'll get a bill from the doc to submit to your insurance company, who usually reimburses at their usual rates, so you get back a lot of what you paid the doc.
You can call the doc's office and ask. They'll tell you. And if you really can't afford it, there are ways to get assistance. Let us know if you need the details on that.
Thanks for the reply, I found an llmd only 45 minutes from my house. Yay! But he does not take my insurance plan. How much does it usually cost to see a person outside of your insurance?
I actually didn't get joint pain until after I was given steroids while undiagnosed. (Steroids are very bad for Lyme as they weaken the immune system.)
Before that I had mostly neroli and cognitive issues similar to as you mention.
But really no two cases are exactly alike, so don't bother getting hung up on comparing the details.
Before that I had mostly neroli and cognitive issues similar to as you mention.
But really no two cases are exactly alike, so don't bother getting hung up on comparing the details.
Thanks for the advice, I am taking three classes this semester, and I have no choice but to fight and get through this, and take those classes,for now at least.
I have no joint pain, I just have tingling and weird nerve sensations on one side of my face, hands, feet, and arms sometimes, along with having trouble concentrating and short term memory deficits... Any thoughts?
I have no joint pain, I just have tingling and weird nerve sensations on one side of my face, hands, feet, and arms sometimes, along with having trouble concentrating and short term memory deficits... Any thoughts?
I hear you. There seems to be NO one-size-fits-all rule for how fast Lyme recovery kicks in. Everyone is different, based on what infection(s) you have, how long you've been ill, how long the treatment period is, etc. I had Lyme plus babesia, and they had to be treated separately, at least partly because the die-off reaction from treating two infections at the same time might be more than the body can handle.
Talk with your doc about what sort of side effects s/he might anticipate and ask for the doc's guidance on how much you might be affected by the meds. I personally never felt worse on the meds than I did before I started taking them, and just improved gradually over the course of treatment, which added up to about 7 months total. I was still kind of worn out for several months after that (and maybe longer than I remember), in just recuperating from the physical stress. I am a good bit older than you, so you might spring back really fast, but dunno.
Given that school is just now starting for the year, you might call your doc and ask the same question: should I plow ahead at school, or take a leave of absence for a semester or two? You are wise to think of this. There's no one size fits all in Lyme, because it all depends on your infections and your overall health. Let us know what you decide -- hang in there!
As bad as Lyme is, acquiring a diagnosis was the hardest part for me to achieve. After that, it was just bug-blasting with abx and slow but steady recuperation.
Talk with your doc about what sort of side effects s/he might anticipate and ask for the doc's guidance on how much you might be affected by the meds. I personally never felt worse on the meds than I did before I started taking them, and just improved gradually over the course of treatment, which added up to about 7 months total. I was still kind of worn out for several months after that (and maybe longer than I remember), in just recuperating from the physical stress. I am a good bit older than you, so you might spring back really fast, but dunno.
Given that school is just now starting for the year, you might call your doc and ask the same question: should I plow ahead at school, or take a leave of absence for a semester or two? You are wise to think of this. There's no one size fits all in Lyme, because it all depends on your infections and your overall health. Let us know what you decide -- hang in there!
As bad as Lyme is, acquiring a diagnosis was the hardest part for me to achieve. After that, it was just bug-blasting with abx and slow but steady recuperation.
Just a follow up comment for the other one, I am a college junior who needs to be in top mental shape in order to finish, so you can see how desperate I am!!
Thanks wonko and Jackie for all the input, from the start of your medications, how long did it take you to feel a difference in your cognitive effects, since you said you had brain fog for awhile before you started meds?
Just a couple more comments based on what I read above: (I'm caring for my infant daughter, so I don't always read threads in whole):
You don't always need IV antibiotics to get better, even if you have neuro symptoms. I was treated fully on oral antibiotics.
My Lyme dr put it to me this way: I was going to need long term treatment, whether with oral or IV meds. No way was my insurance going to cover long term IV meds, and they are $$&. Also, with IV the risk is greater for complications.
As for the Q of am I 100% better? Well, honestly, who knows! I was sick for years and treated for years. So much time has passed, so I'm not sure if some of what I feel now is from age, or from the fatigue of being a new mom, etc. I can say that I got back to a new normal and that I work full time in a challenging/competitive and rewarding career. (And I get good reviews, too.)
Go forward, be fearless, ask questions, and get well! You're young and caught this early!!
You don't always need IV antibiotics to get better, even if you have neuro symptoms. I was treated fully on oral antibiotics.
My Lyme dr put it to me this way: I was going to need long term treatment, whether with oral or IV meds. No way was my insurance going to cover long term IV meds, and they are $$&. Also, with IV the risk is greater for complications.
As for the Q of am I 100% better? Well, honestly, who knows! I was sick for years and treated for years. So much time has passed, so I'm not sure if some of what I feel now is from age, or from the fatigue of being a new mom, etc. I can say that I got back to a new normal and that I work full time in a challenging/competitive and rewarding career. (And I get good reviews, too.)
Go forward, be fearless, ask questions, and get well! You're young and caught this early!!
One of the splits in the medical community is what tests to use in diagnosing Lyme. The standard tests, called ELISA and Western blot, rely on the body's immune system reaction to an infection, but that's a problem in Lyme because the Lyme bacteria are able to suppress ... yes, the body's immune system reaction to an infection. Therefore you can be infected and ill, but the test may you're not. The tests aren't useless, but they are not the last word -- unfortunately, 'mainstream' docs (those who are not aware of Lyme's tricks) rely heavily if not solely on ELISA and W.blot.
A Lyme specialist (aka LLMD, not a degree or title, just patient shorthand for a doc who thinks bigger thoughts about Lyme; short for Lyme-Literate Medical Doctor) may run the W.blot and ELISA tests (my doc did) AND also run another test developed by IGeneX Labs, called a PCR test, short for 'polymerase chain reaction' test, which looks not for your immune system reaction to a Lyme infection, but instead looks for direct evidence of Lyme: the DNA of Lyme bacteria -- gene material carried in the Lyme cells themselves.
I think of the difference between the two types of tests as the ELISA/W.blot tests being footprints you may or may not see after a burglar has been in your house -- if you see the footprints, that's evidence; if you don't see the footprints, it is not proof that you were NOT robbed. That is: 'Absence of evidence is not evidence of absence.'
On the other hand, the IGeneX PCR test is like seeing the burglar himself, not just scouting for footprints that may or may not be there. That's why Lyme docs often use PCR testing.
Unfortunatley, nonLLMDs think the ELISA/W.blot tests are just fine, and don't use the PCR tests. So you can have a true case of Lyme, but ELISE and W.blot may not show it.
My doc ran all three tests on me -- not sure why; in those days I knew nothing except that I was very ill, and I wasn't asking a lot of questions. My W.blot/ELISA tests AND the IgeneX PCR test all came back positive, but that is not true of everyone.
So to answer your question: Which is better, ELISA or W.blot? Neither. The best one, according to my understanding, is the IGeneX PCR test.
The problem is that nonLLMDs believe that ELISA and W.blot are just fine, end of story. Thus the importance of finding an LLMD.
--- As to detecting co-infections, the doc will take a care history of your symptoms, and based on that information may order tests to confirm or rule out other infections. For example, I had babesiosis along with Lyme. 'Babs' is similar to malaria, but carried by the same ticks as Lyme.
If your memory is hazy sometimes (as often happens with Lyme), then for the week or two before your dr appointment, jot down your symptoms every day or when you notice something, no matter how insignficant it may seem by itself. Put the information on your PDA/cellfone or a piece of paper carried in your pocket, whatever works. Then take that with you to the doc appointment and use it to give the data to the doc. Your input is critical, because there are a number of co-infections and testing for all of them is expensive.
This isn't as much work as it sounds ... and it will give the doc valuable info!
A Lyme specialist (aka LLMD, not a degree or title, just patient shorthand for a doc who thinks bigger thoughts about Lyme; short for Lyme-Literate Medical Doctor) may run the W.blot and ELISA tests (my doc did) AND also run another test developed by IGeneX Labs, called a PCR test, short for 'polymerase chain reaction' test, which looks not for your immune system reaction to a Lyme infection, but instead looks for direct evidence of Lyme: the DNA of Lyme bacteria -- gene material carried in the Lyme cells themselves.
I think of the difference between the two types of tests as the ELISA/W.blot tests being footprints you may or may not see after a burglar has been in your house -- if you see the footprints, that's evidence; if you don't see the footprints, it is not proof that you were NOT robbed. That is: 'Absence of evidence is not evidence of absence.'
On the other hand, the IGeneX PCR test is like seeing the burglar himself, not just scouting for footprints that may or may not be there. That's why Lyme docs often use PCR testing.
Unfortunatley, nonLLMDs think the ELISA/W.blot tests are just fine, and don't use the PCR tests. So you can have a true case of Lyme, but ELISE and W.blot may not show it.
My doc ran all three tests on me -- not sure why; in those days I knew nothing except that I was very ill, and I wasn't asking a lot of questions. My W.blot/ELISA tests AND the IgeneX PCR test all came back positive, but that is not true of everyone.
So to answer your question: Which is better, ELISA or W.blot? Neither. The best one, according to my understanding, is the IGeneX PCR test.
The problem is that nonLLMDs believe that ELISA and W.blot are just fine, end of story. Thus the importance of finding an LLMD.
--- As to detecting co-infections, the doc will take a care history of your symptoms, and based on that information may order tests to confirm or rule out other infections. For example, I had babesiosis along with Lyme. 'Babs' is similar to malaria, but carried by the same ticks as Lyme.
If your memory is hazy sometimes (as often happens with Lyme), then for the week or two before your dr appointment, jot down your symptoms every day or when you notice something, no matter how insignficant it may seem by itself. Put the information on your PDA/cellfone or a piece of paper carried in your pocket, whatever works. Then take that with you to the doc appointment and use it to give the data to the doc. Your input is critical, because there are a number of co-infections and testing for all of them is expensive.
This isn't as much work as it sounds ... and it will give the doc valuable info!
Thanks, for all the feedback everyone. What are the best tests to find Lyme disease? The Elisa, or western blot?
Also, how do the doctors find any co-infections that come with Lyme?
Also, how do the doctors find any co-infections that come with Lyme?
No, I had no IV. My doc never suggested it. I don't know how the doc parsed the decision tree on how he treated with what for how long. I wasn't thinking real clearly back then. Ha. And PS, my doc is pretty well known in the Lyme community, so he likely was not out-of-date on cutting edge treatments.
Compared to the symptoms others here have reported, I don't think I had particularly bad neurological (brain) symptoms from the Lyme, and maybe that played into what the doc gave me. It's my impression that IV is used for those whose symptoms don't get significantly better on oral meds, but I haven't done any research on it.
Compared to the symptoms others here have reported, I don't think I had particularly bad neurological (brain) symptoms from the Lyme, and maybe that played into what the doc gave me. It's my impression that IV is used for those whose symptoms don't get significantly better on oral meds, but I haven't done any research on it.
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