My last post I was very excited after making amazing progress after a few months of cefuroxime and doxy. My brain fog was down to where I could read for hours, I could handle a full day of social activities every week, and was starting to do some light walking. Right before Christmas I took a walk and had some chest pain, then completely crashed. I was crying multiple times a day, my joints felt awful, I was dizzy all the time, could barely read, etc. It took a month or two for me to feel remotely okay again. My doctor had me try antihistamines, (did nothing but make me feel drunk) and tylenol (did nothing)
March 16th I tried taking ginger shots. They were AMAZING. Joint pain decreased right away. After a few days I noticed increased energy, clearer thinking. I kept taking 2-3 per day, they didn't fix everything but they made me feel human again.
A week ago my mom wanted a girl's shopping day. We were running around for 9 hours, so predictably I crashed. It was worse than I expected though, and I had a very emotionally taxing situation the next day. I had a follow-up with my LLMD on Thursday.
This appointment is where I really started losing faith in her. For context, she doesn't do any herbal stuff, just abx. When I first saw her she sent me to a neurologist who told me most of her (Lyme doc's) patients to really well but some are on abx for life. I'm okay being on abx for months or years, but not life. But Lyme doc seemed really confident she could have me in remission in a few years. So I started treatment in August. The first two months were really rough until she dialed it back to something my body could handle, she seemed like she really cared and was taking me seriously.
This last appointment was awful. She was very dismissive about the ginger, saying "you havent studied it" (I had) and went on and on about wishful thinking. She even went so far as to say it could have caused my chest pain (which was from Tuesday's flare, this is a known pattern that flares=chest pain for me.)
Then she was dismissive of my concerns with tylenol. She has me taking 3g/day to lower inflammation. I told her it didn't affect my pain/energy at all and asked if I could stop taking it since it was driving my liver enzymes up. My ALT has always been high, mid-50s to low-60s. All my doctors say it's nothing to worry about. It jumped up to 70 after I started the tylenol. She told me that was nothing to worry about, okay fine. But then she said "I don't think it's from the tylenol, this is something that happens with obesity"
I HAD LOST 20LBS AND SHE KNOWS THAT! Why on earth would my ALT only jump up after I lose the weight??? Seems like a pretty clear correlation with the Tylenol. I can accept that it's nothing to worry about but let's at least be realistic about the cause. Oh, and she sent me to the ER that night for the chest pain, and my ALT was 90. But yeah, let's blame the weight even though it's gone down.
So here's my dilemma. I know how to manage my sypmtoms, I know what makes me feel better. But I was hoping for remission. If I can get remission in the next few years, these ups and downs are worth it. But if I'm chasing a pipe dream with these antibiotics, I'd rather get off this roller coaster, try some natural treatments, be monitored by my other doctors, and live my life without worrying I'll keep getting worse. Last year I was able to go on vacation and recover within a week or so. This year one shopping day with lots of rest put me in the ER.
So if any of y'all have thoughts I'd greatly appreciate it. Sorry for the long post.
I guess I should add, before seeing this doctor I was taking some buhner herbs which kept me stable with very slow improvements. I wanted to get better sooner, but at least I wasn't constantly worried I'd wake up completely dysfuntional. Now I feel like I'm a flare away from complete ruin. I've had Lyme for almost 18 years, if I'm a lifer then I want to be able to accept and live with that
Sorry to hear this. Just a few thoughts.
It can take a lot of trial and error with herbs or abx/anti-fungals/anti-parasitics. Sounds like you've found what helps with herbs, maybe you need to take some time with abx also. I actually after praying about it, quit my doc recently and am just going on my own but it's not recommended for everyone - you have to have abx access for one thing. My doc seemed to be contradicting at times and not knowing what to do, and I feel less pressure w/o a doc right now. And with abx, herbs... I kind of just bounce around with what works, even taking very low doses at times but I am seeing improvement. Mold seems to have been part of mine too.
I used to get down when I thought I wasn't responding to abx quickly enough, but I've become more content now to chip away at it and leave it up to God. I'd like to get completely well but like you it can get very confusing with big herxes and at times it seems like I would go backwards so I'm trying to just chip away gradually though at times I do have harder herxes.
It does seem like with me I have to make sure I'm hitting Bart enough. I'll take my mold/yeast/Babs/Lyme stuff and other biofilm breakers but have to make sure to hit bart quite hard.
It can take a lot of trial and error with herbs or abx/anti-fungals/anti-parasitics. Sounds like you've found what helps with herbs, maybe you need to take some time with abx also. I actually after praying about it, quit my doc recently and am just going on my own but it's not recommended for everyone - you have to have abx access for one thing. My doc seemed to be contradicting at times and not knowing what to do, and I feel less pressure w/o a doc right now. And with abx, herbs... I kind of just bounce around with what works, even taking very low doses at times but I am seeing improvement. Mold seems to have been part of mine too.
I used to get down when I thought I wasn't responding to abx quickly enough, but I've become more content now to chip away at it and leave it up to God. I'd like to get completely well but like you it can get very confusing with big herxes and at times it seems like I would go backwards so I'm trying to just chip away gradually though at times I do have harder herxes.
It does seem like with me I have to make sure I'm hitting Bart enough. I'll take my mold/yeast/Babs/Lyme stuff and other biofilm breakers but have to make sure to hit bart quite hard.
Thank you, that's really encouraging. These massive swings between better than I've ever felt and massively debilitated are scary, but my mom advised me to wait as well. I just wish I could know when to stop and when to keep going.
Sounds like you went through the same scenario that I went through - if 8+ months of abx didn't generate some sort of turnaround, then it was likely becoming counterproductive. My LLMD was more than happy to place me on an even more intrusive ABX regimen, but I decided to put on the brakes and become my own advocate. The best advice I can give you if you decide to go this route is that you must be willing to try many things - keep the treatments that have some results and abandon the ones that don't or aren't sustainable. In my opinion, forever ABX treatments aren't sustainable.....my 2 cents worth....
i am not sure how much any one can really advise here
perhaps the most helpful thing is to write a little about the framing of the issue
Lyme disease occurs on a spectrum - and recovery is also on a spectrum
some people recover easily on minimal antibiotics ( or even none at all) some do not recover despite many many antibiotics
its not necessarily the case that antibiotics don't work - or are the wrong approach - more that we simply do not have highly specific drugs that are very effective for these difficult to kill microbes - in biofilms, inside cells or in persister cell states - so doctors are doing the best they can with the tools they have.
unfortunately, no one can know ahead of time which fraction of the population they will end up being in.
ie we would all like to be the ones to recover easily - or even recover at all - but until we try we will not know - that's just the lay of the land.
so for this reason - and since there are risks associated with any intervention - it makes logical sense to start out with the gentler approaches / less heavy treatments and ramp up treatment only if that doesn't work - thereby minimising risks
unless you are very lucky and your immune system is in good enough shape to do most of the work ( which seems to be rare if you have been sick with lyme and co for several years) long courses of combination antibiotics are the norm
its also normal for symptoms/herx/dysregulation to ramp up as treatment ramps up - and for the patient to feel much worse from heavier treatment and potentially just feel dysregulated rather than feeling better - then feel they must be doing it wrong or want to stop – its understandable - treatment of this thing is Very Very Hard
ultimately everyone has to pick how much discomfort they are willing to endure – or may need to take breaks to regather their strength along the way
but at the present time – if you have not recovered from shorter or milder treatments – there are no magic bullets – and its likely that heavier or longer treatments are needed.
I am in the same boat – and I do not wish it on anyone – but I think its best to be mentally prepared for what it might take - rather than constantly surprised or disappointed that its not quicker / easier.
Reading the success stories – most people who have got well after years of sickness have gone through hell to get there - with many dark times of despair along the way – but they stuck at it
Drugs aren’t the only piece of the puzzle thou - there are a lot of unknowns still that influence who recovers and who does not - several of the top LLMD's have emphasised for years now how other sources of inflammation / dysregulation are a major factor in each patient - limiting their recovery. Think Horowitz and his 16point MSIDS map and Jemsek and his POEMS etc
So there is plenty to work on and optimise apart from just antibiotics
Ref your particular LLMD - I think you have to put it in the light of whatever alterative you are comparing the current path to
Compared to the ideal LLMD? – well, sadly that also does not exist – so I would say its best not to start there
Compared to another LLMD? – OK– but consider the change carefully – they will also have strengths and weaknesses – and there will be additional costs of switching – so I would avoid making any kneejerk decisions. Esp if emotional at the time.
Compared to self-treating? – I am self-treating – but I do not think I would advise it to anyone else – its EXTREMELY HARD. You have none of the experience of treating 100’s or 1000’s of patients that even an average LLMD has – and to make matters worse you are both the doctor and the patient - which makes objectivity near impossible.
so realistically you may be better working with their positives and focussing on those rather than their negatives
I also think many of us have been conditioned towards thinking antibiotics should work quickly – or the signs should be obvious etc.
That can be the case for a subset of lyme patients – but the studies show that for the majority how have been sick a long time - its more likely to take a few years - and those years may well be bumpy/ unclear/ challenging.
Hang in there – try not to make knee jerk decisions - take a mini break to regroup if you need to – be collaborative but assertive with your LLMD
“I’ve given the high‑dose Tylenol a fair trial, but it hasn’t improved my symptoms. Because of that, I’m going to stop taking it. I’d appreciate your guidance on what we should try next.”
all the best !
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
perhaps the most helpful thing is to write a little about the framing of the issue
Lyme disease occurs on a spectrum - and recovery is also on a spectrum
some people recover easily on minimal antibiotics ( or even none at all) some do not recover despite many many antibiotics
its not necessarily the case that antibiotics don't work - or are the wrong approach - more that we simply do not have highly specific drugs that are very effective for these difficult to kill microbes - in biofilms, inside cells or in persister cell states - so doctors are doing the best they can with the tools they have.
unfortunately, no one can know ahead of time which fraction of the population they will end up being in.
ie we would all like to be the ones to recover easily - or even recover at all - but until we try we will not know - that's just the lay of the land.
so for this reason - and since there are risks associated with any intervention - it makes logical sense to start out with the gentler approaches / less heavy treatments and ramp up treatment only if that doesn't work - thereby minimising risks
unless you are very lucky and your immune system is in good enough shape to do most of the work ( which seems to be rare if you have been sick with lyme and co for several years) long courses of combination antibiotics are the norm
its also normal for symptoms/herx/dysregulation to ramp up as treatment ramps up - and for the patient to feel much worse from heavier treatment and potentially just feel dysregulated rather than feeling better - then feel they must be doing it wrong or want to stop – its understandable - treatment of this thing is Very Very Hard
ultimately everyone has to pick how much discomfort they are willing to endure – or may need to take breaks to regather their strength along the way
but at the present time – if you have not recovered from shorter or milder treatments – there are no magic bullets – and its likely that heavier or longer treatments are needed.
I am in the same boat – and I do not wish it on anyone – but I think its best to be mentally prepared for what it might take - rather than constantly surprised or disappointed that its not quicker / easier.
Reading the success stories – most people who have got well after years of sickness have gone through hell to get there - with many dark times of despair along the way – but they stuck at it
Drugs aren’t the only piece of the puzzle thou - there are a lot of unknowns still that influence who recovers and who does not - several of the top LLMD's have emphasised for years now how other sources of inflammation / dysregulation are a major factor in each patient - limiting their recovery. Think Horowitz and his 16point MSIDS map and Jemsek and his POEMS etc
So there is plenty to work on and optimise apart from just antibiotics
Ref your particular LLMD - I think you have to put it in the light of whatever alterative you are comparing the current path to
Compared to the ideal LLMD? – well, sadly that also does not exist – so I would say its best not to start there
Compared to another LLMD? – OK– but consider the change carefully – they will also have strengths and weaknesses – and there will be additional costs of switching – so I would avoid making any kneejerk decisions. Esp if emotional at the time.
Compared to self-treating? – I am self-treating – but I do not think I would advise it to anyone else – its EXTREMELY HARD. You have none of the experience of treating 100’s or 1000’s of patients that even an average LLMD has – and to make matters worse you are both the doctor and the patient - which makes objectivity near impossible.
so realistically you may be better working with their positives and focussing on those rather than their negatives
I also think many of us have been conditioned towards thinking antibiotics should work quickly – or the signs should be obvious etc.
That can be the case for a subset of lyme patients – but the studies show that for the majority how have been sick a long time - its more likely to take a few years - and those years may well be bumpy/ unclear/ challenging.
Hang in there – try not to make knee jerk decisions - take a mini break to regroup if you need to – be collaborative but assertive with your LLMD
“I’ve given the high‑dose Tylenol a fair trial, but it hasn’t improved my symptoms. Because of that, I’m going to stop taking it. I’d appreciate your guidance on what we should try next.”
all the best !
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
As far as staying on abx for life, you might get some clarification on what that means. Dr J used to say, after lyme becomes neurolyme, even if you push it into remission, you're going to need to stay on a small maintenance dose of abx for life to keep it there. That usually involved being on abx one day out of a month.
It sounds like your llmd lacks flexibility. It's unlikely that you're going to find a doctor that always agrees with you. In your position, I'd probably try to make things work before ditching the llmd. By this, I mean go ahead and try herbal stuff alongside her abx. Don't expect them to prescribe it, but see if they're ok with you trying stuff on your own in addition. Start with something fairly innocuous like ginger shots. If they aren't trained in natural stuff don't expect them to have positive opinions of them, or push them to give you information on them. But it's good to check on the weirder stuff with them to make sure there aren"t interactions with abx to be worried about.
I'd totally ditch the tylenol if it's not helping. It can be bad for your liver. You might try milk thistle or alpha lipoic acid to help with your liver numbers. Then just tell your doctor you ditched tylenol rather than asking to.
I guess what I'm advising is, treat your doctor more like someone advising you, or a coach on how to better your health rather than an authority you must listen to. So if they can handle that. This is how I handle the many doctors I don't fully agree with. I take what I can get from each of them, and don't expect them to understand everything but to just help me with the aspects we agree enough to work together on.
It sounds like your llmd lacks flexibility. It's unlikely that you're going to find a doctor that always agrees with you. In your position, I'd probably try to make things work before ditching the llmd. By this, I mean go ahead and try herbal stuff alongside her abx. Don't expect them to prescribe it, but see if they're ok with you trying stuff on your own in addition. Start with something fairly innocuous like ginger shots. If they aren't trained in natural stuff don't expect them to have positive opinions of them, or push them to give you information on them. But it's good to check on the weirder stuff with them to make sure there aren"t interactions with abx to be worried about.
I'd totally ditch the tylenol if it's not helping. It can be bad for your liver. You might try milk thistle or alpha lipoic acid to help with your liver numbers. Then just tell your doctor you ditched tylenol rather than asking to.
I guess what I'm advising is, treat your doctor more like someone advising you, or a coach on how to better your health rather than an authority you must listen to. So if they can handle that. This is how I handle the many doctors I don't fully agree with. I take what I can get from each of them, and don't expect them to understand everything but to just help me with the aspects we agree enough to work together on.
After so many, many years of dealing with Lyme and all the fun that comes with it, treating it is like trading stocks. Doctors educate themselves, and that includes LLMD's, as best they can or in different ways, then try what they believe to be a possible answer on the patient. I don't mean that negatively, just an observation and through experience.
Some have really great communication skills, others do not. In my case, I have tried different doctors and different naturopaths. In the end, I realized my best hope was the original LLMD I went to.
He uses both antibiotics and herbs. He also listens to my concerns or ideas. Your LLMD, Chocolate, didn't seem to listen much to you last visit. It seems more plausible your ALT AST numbers were from Tylenol. So now, obviously, you have to decide if the trust is permanently lost. And if you are looking for someone who uses herbs, antibiotics or both, it's a tough search to find people local like that. But, it can be done. Keeping the will do continue looking is the hard part. Totally get that, but for your mom and family members, gotta keep on.
I struggle being sick again for so long ( I was 85% or higher once for two years then had heart surgery that took it away), but all I can do is keep trying and praying. And I wish you answers as you reach for those answers and strive to get well.
Some have really great communication skills, others do not. In my case, I have tried different doctors and different naturopaths. In the end, I realized my best hope was the original LLMD I went to.
He uses both antibiotics and herbs. He also listens to my concerns or ideas. Your LLMD, Chocolate, didn't seem to listen much to you last visit. It seems more plausible your ALT AST numbers were from Tylenol. So now, obviously, you have to decide if the trust is permanently lost. And if you are looking for someone who uses herbs, antibiotics or both, it's a tough search to find people local like that. But, it can be done. Keeping the will do continue looking is the hard part. Totally get that, but for your mom and family members, gotta keep on.
I struggle being sick again for so long ( I was 85% or higher once for two years then had heart surgery that took it away), but all I can do is keep trying and praying. And I wish you answers as you reach for those answers and strive to get well.
Forgive me if this has already been mentioned, but why not do some self treatment along with your doctor's abx? I don't know how everyone feels about that any more, but I do know it used to be fairly common some years back.
Very few MD's will know anything really about herbs and what they do and do not do - I'm an herbalist and talk with my own doctors, and most say all herbs are bad. So, even though I'm on a bunch of prescription drugs now, I know what I can take and what I can't - so I ignore the doctors chatter about things they don't know.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
http://www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014, reinfected with Lyme 2021 (Doxy tx)
Now, malignant hypertension and autonomic nervous system damage.
Very few MD's will know anything really about herbs and what they do and do not do - I'm an herbalist and talk with my own doctors, and most say all herbs are bad. So, even though I'm on a bunch of prescription drugs now, I know what I can take and what I can't - so I ignore the doctors chatter about things they don't know.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
http://www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014, reinfected with Lyme 2021 (Doxy tx)
Now, malignant hypertension and autonomic nervous system damage.
Traveler - Love just seeing your name on here! Hope you are doing better/near well or well.
Hi Running Wild!! Thank you, and yes!! Im doing very well! Once I figured out it was nervous system damage that was causing my "new" health issues, I was able to talk my doctor into helping me keep it calmed, and use a few herbs to help me along. I'm pretty active now, but do still tire easily - I do believe it's directly caused by my always being anemic. Imagine that! Lol.
I do hope you are doing well, considering what you are dealing with!
And thank you for your well-wishes!!
Trav. =)
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
http://www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014, reinfected with Lyme 2021 (Doxy tx)
Now, malignant hypertension and autonomic nervous system damage.
I do hope you are doing well, considering what you are dealing with!
And thank you for your well-wishes!!
Trav. =)
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
http://www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014, reinfected with Lyme 2021 (Doxy tx)
Now, malignant hypertension and autonomic nervous system damage.
Traveler - One question. What was done to keep your nervous system calm?
Hi Running wild,
Long story short - I use 10mgs of Amitriptyline daily to stop my nervous system from ramping up uncontrollably.
Long story:
When I was having severe blood pressure issues, I would also shake - a full body shaking that literally rattled and bounced every wheelchair they would put me in. I had one of these episodes in front of my doctor, which lead to a very deep conversation about why that was happening.
My Primary Care doc knows the basics about lyme disease, so there was no pushback from her about nervous system damage after 40 yrs of living with these diseases, fortunately. She suggested starting on a very low dose of Amitriptyline daily and we would monitor things closely since I was having to see her weekly at that point.
That's all I needed though! Because my issues always come about after 9 pm, I take the Amitriptyline between 8 and 8:30 pm. If I'm late (after 9:30pm), the shaking starts again.
If I wasn't already on 12 other prescriptions at that time, I would gave turned to my herbs, but I needed to do what I did. I've been able to reduce my prescriptions to 9 that I need now - 1 being prescription strength potassium and 2 being for the same BP med, but 2 different dose sizes.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
http://www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014, reinfected with Lyme 2021 (Doxy tx)
Now, malignant hypertension and autonomic nervous system damage.
Long story short - I use 10mgs of Amitriptyline daily to stop my nervous system from ramping up uncontrollably.
Long story:
When I was having severe blood pressure issues, I would also shake - a full body shaking that literally rattled and bounced every wheelchair they would put me in. I had one of these episodes in front of my doctor, which lead to a very deep conversation about why that was happening.
My Primary Care doc knows the basics about lyme disease, so there was no pushback from her about nervous system damage after 40 yrs of living with these diseases, fortunately. She suggested starting on a very low dose of Amitriptyline daily and we would monitor things closely since I was having to see her weekly at that point.
That's all I needed though! Because my issues always come about after 9 pm, I take the Amitriptyline between 8 and 8:30 pm. If I'm late (after 9:30pm), the shaking starts again.
If I wasn't already on 12 other prescriptions at that time, I would gave turned to my herbs, but I needed to do what I did. I've been able to reduce my prescriptions to 9 that I need now - 1 being prescription strength potassium and 2 being for the same BP med, but 2 different dose sizes.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
http://www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014, reinfected with Lyme 2021 (Doxy tx)
Now, malignant hypertension and autonomic nervous system damage.
Thank you everyone who responded. I'm so grateful you all are here and willing to help. I'm staying with my current doc, ditched the tylenol, and I'm keeping the ginger. I sent her articles on it from John's Hopkins and Cleveland Clinic so hopefully she won't give me more pushback.
I'm feeling a lot better now. I know there are ups and downs but the past 2 weeks I've been able to do some exercise which has been really encouraging. Slow strength training with all exercises done lying or sitting down.
I'm feeling a lot better now. I know there are ups and downs but the past 2 weeks I've been able to do some exercise which has been really encouraging. Slow strength training with all exercises done lying or sitting down.
Telling someone to take high doses of Tylenol sounds risky... If your doctor keeps recommending similar treatments, I think you should get a new doctor. But if you doctor is otherwise good, maybe its just a fluke. One of the lyme docs I went to, used very mild treatments that I was really not sure about, but they ended up helping.
I personally tried antibiotics, but after 2 or 3 months, they were making my joint pain worse. I'm a fan of trying the stronger (more concentrated) type of herbals and if you tolerate those, stick with those (but that's just me.)
Self treating, I think depends on the danger/toxicity of things you are taking.
Its really hard to tell what's getting worse and what is getting better. Also, everyone has different coinfections.
I believe I have a genetic susceptibility to blood thinners making my blood too thin, and high iron levels in my blood ( but this is just my opinion, and I have no tests or evidence to prove anything).
I'm glad you are feeling better slowly and able to do some exercises.
Lyme has so many ups and downs, and praying that yours stabilizes soon.
I personally tried antibiotics, but after 2 or 3 months, they were making my joint pain worse. I'm a fan of trying the stronger (more concentrated) type of herbals and if you tolerate those, stick with those (but that's just me.)
Self treating, I think depends on the danger/toxicity of things you are taking.
Its really hard to tell what's getting worse and what is getting better. Also, everyone has different coinfections.
I believe I have a genetic susceptibility to blood thinners making my blood too thin, and high iron levels in my blood ( but this is just my opinion, and I have no tests or evidence to prove anything).
I'm glad you are feeling better slowly and able to do some exercises.
Lyme has so many ups and downs, and praying that yours stabilizes soon.
I would ditch that doctor, frankly. A provider who treats complex chronic illness but has no tools other than pharmaceuticals is not a worthwhile provider. High doses of Tylenol (while ignoring lab results that indicate it could be harming you) is not a long-term strategy for medical care. I'm really sorry that they blamed issues on your weight as well.
If there are positive qualities to your doctor and you want to keep seeing them, then I strongly echo Bailey's perspective on doctors. They are consultants, not authorities, especially when it comes to such complex conditions.
A note on the ginger shots: Ginger is an herb with a fair amount of evidence-based science behind it. One way it can impact you is by stimulating your vagus nerve. When I consume strong, spicy ginger (even in the form of a ginger beer) I feel amazing, too, because of the impact on my vague nerve. It's like a shortcut to the important nervous system work we all should be doing but don't always have time for! So if ginger shots make you feel amazing, then there's a chance that could be pointing you in a direction: Have you done much concerted work on your vagus nerve and nervous system more broadly? With herbs, drugs, devices, or one of the many treatment programs and practices that can blunt or reverse chronic illness? (That last category is what really changed the game for me and brought me to remission, so I have to ask!) As Traveler alluded to, sometimes what we're suffering from is damage and dysfunction rather than active infections, partly or even entirely.
I hope you develop trust in this provider or find one who is a better fit! And that you feel more stability soon!
Lyme, Bartonella, Babesia, Mycoplasma, EBV
Mold, MCAS, POTS, CFS/ME, HPA axis
Herbs, DNRS, diet, nutrients, EOs
If there are positive qualities to your doctor and you want to keep seeing them, then I strongly echo Bailey's perspective on doctors. They are consultants, not authorities, especially when it comes to such complex conditions.
A note on the ginger shots: Ginger is an herb with a fair amount of evidence-based science behind it. One way it can impact you is by stimulating your vagus nerve. When I consume strong, spicy ginger (even in the form of a ginger beer) I feel amazing, too, because of the impact on my vague nerve. It's like a shortcut to the important nervous system work we all should be doing but don't always have time for! So if ginger shots make you feel amazing, then there's a chance that could be pointing you in a direction: Have you done much concerted work on your vagus nerve and nervous system more broadly? With herbs, drugs, devices, or one of the many treatment programs and practices that can blunt or reverse chronic illness? (That last category is what really changed the game for me and brought me to remission, so I have to ask!) As Traveler alluded to, sometimes what we're suffering from is damage and dysfunction rather than active infections, partly or even entirely.
I hope you develop trust in this provider or find one who is a better fit! And that you feel more stability soon!
Lyme, Bartonella, Babesia, Mycoplasma, EBV
Mold, MCAS, POTS, CFS/ME, HPA axis
Herbs, DNRS, diet, nutrients, EOs
I noticed that whenever I took a dose of ibuprofen in the morning prior to my afternoon run, I generally experienced better/faster runs. Unfortunately, doing that daily is unsustainable. Enter into the room.... ginger.... the natural alternative to ibuprofen. I found that it's generally helpful, but seems to also have a double edged effect - enhances microbial die offs. I am personally experiencing this as I get further into my usage of it.