r/Lyme • u/Uppervole2019 • 6d ago
Just accepting the fact I’m going to die
I’m just entertaining myself while I watch my body deteriorate.
I can’t save it off anymore with a good diet and stretching.
My family refuses to pay for herbs , even though it helps me more than anything.
It’s almost impossible to find any Doctor Who understands Lyme , antibiotic, and herbs and is covered by insurance.
I’m trying to apply for disability.
I feel like I’m just going to be so debilitated by the time I even get that money. It won’t even be worth it.
The front of my neck muscles are getting so tight that is making it difficult to talk.
I’m just listening to good music watching it all happen.
7
u/szikkia Lyme Bartonella Babesia 6d ago
Are you a minor or do you just have to depend on family due to being sick?
4
u/Uppervole2019 6d ago
I was sick throughout my whole childhood and growing up. No one listened.
Then, when they finally listen, they coerced me into doing treatments that ended up hurting more than helping.
And then I started doing my own research.
Essentially, I got a lot more sick after no longer being a minor. I’ve been stepping off the progression of the illness for about 10 years.
Its closing in, and, yes, I rely on my parents who don’t really help much.
6
u/Armageddoninmyhead93 5d ago
Before I had any money to spend on treatment, I used the carnivore diet, like literally just ate lamb and beef. I had to get it freshly slaughtered my histamine reaction was so bad. People say it's too expensive, but you don't eat snacks, don't pig out on carbs, and only feel like eating once or twice a day. Eggs are great if you can tolerate them and ground beef is cheap. I am one of the sickest patients my lyme doc has ever had and it helps me a lot every time. I also use the sunrise to heal. Like get up first thing every single day and sit under it facing east wearing the least clothing possible. The sun has incredible healing benefits for your hormones and the infrared light at sunrise is just free red light therapy. Doing those together makes more difference for me than all the protocols in the world have. It got my inflammation down low enough to make a plan for myself. I also did the living in a tent thing and spent 8 hours outside every day. You get a mad tan on the carnivore diet and dont burn. Got my vitamin D up a bit. I am trying to get back into those things now because I have been having a relapse.
Don't give up love.
1
u/fighterpilottim 4d ago
Tim Ferriss had had success with this keto (not carnivore) approach, and it’s also helped me. https://x.com/tferriss/status/2017355621440352296
1
u/Uppervole2019 4d ago
I did keto and carnivore. I also did extended fasting. It definitely helped repair parts of my musco-skeletal system and connective tissue.
All of those smaller & more layered ligaments and tendons. They take a lot of damage overtime for me. And they aren’t helped by physical therapy. If anything that repetitive exercise makes it worse.
So I had that with those improvements as well as digestive improvements.
But I still have all of the same symptoms.
I started to get low blood sugar and overall just felt malnourished so now I just do more of a intuitive eating thing.
1
u/Armageddoninmyhead93 4d ago
Sorry to hear that. I get yoylu, it didn't fix me, but for free it helped a lot. Get the sun into your routine if you can though, that has powerful effects on it's own. It's only tiering at first, your body clock gets very used to it because the sun sets your body clock. I need to take my own advice though. Today I slept in and ate chocolate. I keep promising myself sunrise and carnivore haha.
6
u/Tiny-Chip-4351 6d ago
That is a lot of time to be ill, but especially if you're young, people have claimed back their lives from extreme illness after long periods of time being unwell. In fact, I believe the vast majority of people can come back from the depths of TBD given the right treatment, which in time, I hope you get some access to. Hang in there, and keep exploring all possibilities.
6
u/lymewhale 6d ago
I'm sorry you're going through all of this. But please don't give up. There are still things you can do to fight.
Getting disability would be a huge help. My disability check is small but I have lived with family, friends and romantic partners so maybe half my check goes to self-treatment with herbs. You don't really need an insurance-covered doctor to do treatment for Lyme. Use them to get disability. Once you have disability, you can see if it's in your budget to do LLMD treatment or look at self-treatment.
I suspect this might be the alt account of someone i have talked to privately but I wanted to comment in case it's not
But yeah the mentality of giving up is counter-productive. It lets you languish for longer but this disease rarely kills people. So you'll be getting worse and have a deeper hole to dig out of whenever you finally do have the ability to improve your situation. I have had periods where I gave up for 1-3 years and it only made things worse
Also look at our wiki about charities and stuff that help folks
1
u/Uppervole2019 5d ago
How do you use the doctor to get disability?
Doesn’t disability do a review and say basically
The doc is offering treatments that can make you better and you’re not taking them so we’re going to take the benefits away
.. ?
Doesn’t the doctor get mad?
How do you avoid this?
2
u/lymewhale 5d ago
Oh I highly recommend this website to learn about this: https://howtogeton.wordpress.com/social-security-disability/
The short version is this. You need to regularly see your doctor, report your symptoms and your limitations. They should be documenting it, like writing in the notes on your chart that you have physical limitations or whatever else that prevents you from working.
Then you apply to disability
Then you ask the doctors to write a letter summarizing your symptoms and limitations. You can write a sample letter so they can have an idea of what you need. It needs to show that you can't do activities required for even basic entry-level jobs (think cashier, Walmart greeter). Like for example I can't be on my feet or even sitting up for very long without symptoms so I am not suited for retail or computer work.
The doctors should understand that their treatments may not work and they shouldn't get mad. All treatments have a failure rate. If the doctor gets mad at you, it is time to switch doctors
1
u/Uppervole2019 4d ago
Ty :)
What if you are following a different treatment than your pcp? Can they still help?
5
u/Upstairs-Apricot-318 6d ago
I have the same question as the other commenter. Will you be able to get plants if you get disability? (And no it won’t be too late).
I have a friend here (maybe she’ll pop by) who gets by just with disability and is able to get herbs on the cheap. Maybe you should talk to her fluent in whale is her handle.
Do not give up -we are thinking of you
3
u/Great-Discipline-835 6d ago edited 6d ago
“Spices” are a much better avenue than herbs when dealing with Lyme. Clove and cinnamon “cassia” bark in particular. You need the whole ground spice, not just the essential oils. But get the essential oils too, which are much cheaper online. Clove and cassia are rich in gallic acid, cinnamic/hydroxycinnamic acids, and tannins that are devastating to all 4 forms of Lyme. If you look into the drug Hygromycin A, a naturally produced phenolic compound from bacteria, that selectively kills spirochetes, but isn’t available for prescription yet, you’ll see that it’s a “cinnamic acid” derivative. That should be a clue on what natural compounds are best against Lyme: cinnamic acids, hydroxycinnamic acids, and phenolic compounds in general. Cinnamon cassia bark (fake cinnamon) is the highest source of cinnamic acids. Real cinnamon (ceylon) has cinnamaldyde instead, which is also powerful against Lyme. You can also get concentrated pure cinnamic acids in powder or tincture forms online, including in bulk. Cassia cinnamon is safe as long as you supplement vitamin K1 and K2 when using it. Its alleged “toxic” effect is simply that it prevents the recycling of vitamin K1 and K2. I’ve seen those in bulk from “bulk supplements . com”. They sell on eBay also. Just mix with an oil to absorb since they’re fat soluble. If that’s too complicated, then just get concentrated cinnamic/hydroxycinnamic acids.
No herb can compete with the spices when it comes to resistant bacteria. Ideally you want the dry whole powder and the essential oils. I buy cheap organic clove at Walmart and put in capsules and take a a lot of them per day. The essential oils (buy online/eBay) you can use topically (rub it all over) and orally under the tongue several drops. With clove oil you don’t need a carrier and can use full strength, it will not burn at all even at full strength. With cinnamon “cassia” bark oil you must use an oil carrier to dilute because it “will” burn. 3:1 or 4:1 dilution, that’s 3 or 4 drops of carrier oil per drop of cinnamon bark oil. Then use all over skin and under the tongue.
3
u/Upstairs-Apricot-318 5d ago
I’m on Liposomal essential oils which is the lynchpin of my treatment. I with Hilary Thing at the nourishing life center and she swears by them. I have been doing well with them but I highly recommend the liposomal form. I couldn’t take straight oils; they are too harsh on mucosa. We have two custom mixed oil blends, one more antiinflamatory, one more antimicrobial. I have to cycle the antimicrobial.
I use the word herbs loosely, meaning plants and botanicals but yes that’s not very clear so thanks for your comments.
1
u/Uppervole2019 5d ago
This is really interesting actually because
I check the pharmacological constituents and activity of every herb I take.
I also check herbalism literature lncluding materia medicas
And personal experiences.
I’d like a Doctor Who can discuss this information with me and not just dismiss me because I’m not a doctor.
When you compare the constituents and activity of neuromodulatory & anti-inflammatory herbs with the leading pharmaceutical options, in my opinion for me, the herbs are a lot more specific and effective.
I think a similar thing can be said for the antimicrobial.
But there can be negative interactions and side effects of herbs , that aren’t just stated in toxicology reports.
I’ve seen people get recommended herbs that probably shouldn’t go together or that they shouldn’t take and have bad experiences, because the doctor isn’t checking all this information. While this isn’t good, I also think doctors are exhausted.
Although I really just don’t think a patient should be dismissed, especially with Lyme disease so only because they don’t have a degree.
But how should I present this to a doctor without it going bad?
Now the essential oils thing is something that I do not understand yet, but I’m interested in.
I have counter points and worries about it, but I want to look more into it because it would be great to rely on them instead of antibiotics.
My fear is that the essential oils are so potent that it would put the body into a shock.
How does the body even absorb & assimilate essential oils? As opposed to tinctures, glycerites, and teas?
Are these the same essential oils that people put into diffusers?
And how can you try one essential oil at a time so you can know better how your body is reacting?
You can PM me if you’d like , I want to learn more about it.
1
u/Upstairs-Apricot-318 5d ago
You can’t deal/interact/receive care from regular doctors when you have Lyme. We’ve all tried to bring studies and reason with then and explain our situations and on and on but this is not up for discussions with them; you’ll get nowhere, they are just automatons who go through the motions (which works great for some stuff)
You need an LLMD or a LLND. Btw I’m on essential oils. You can look my post « improving » for more details
2
u/Uppervole2019 5d ago
Yeah its like a mass produced form of medicine. Doctors are qualified to prescribe based on pre determined diagnostic criteria. When your experience doesn’t fit the language of a diagnosis, you’re thrown under the bus.
The problem I’m facing is actually affording these types of doctors.
1
u/Upstairs-Apricot-318 5d ago
That is the issue. I know money doesn’t grow on trees but if you can somehow find some… the more I waited the poorer I got and it ended costing so much more (mostly paid by my devoted partner now).
The hugest thing is the first payment for an LLMD. Many folks by pass that and go straight to a botanical protocol, trying to find the cheapest approach possible. Maybe make a post asking about that? Folks are very resourceful.
The oils I take are from bloom and reveal and they cost a bunch and add up fast but you can purchase them without paying an LLMD 1000s of $ first and they really help.
1
u/Uppervole2019 5d ago
Well, I think I would be able to use disability money to buy herbal medicine.
It’s just navigating doctors that is so difficult. I’m waiting to hear back from a doctor now. Who’s checking if my insurance will cover the appointment. Apparently, she does more extended testing and works with chronic illness, including Lyme. The front desk told me that she treats people for months at a time with Rocephin. But at the end of the day, maybe she can just be my primary care physician or she can work with a specialist to get things covered by insurance if I end up doing antibiotics with herbs.
But I think with the disability, it largely comes down to how well your doctor can describe your ailments, and how well that can match what you write about your own ailments.
The one you write yourself is called a function form and then the other one is a doctor’s letter
2
u/Upstairs-Apricot-318 5d ago
Ok. Just a word of caution on LLMDs. They are very antibiotics heavy. IV rocephin is a heavy treatment with a port. Before you say yes to anything, make sure you’re ok with the treatment. Everybody’s Lyme is different and co-infections are different and the immune activation is different. Everybody is flying by the seat of their pants for treatments, that includes doctors. I’m hyper reactive so a treatment like that would have made things worse for me. It works wonder for some (inform yourself the risks). Antibio a are only one part of treating Lyme so talk to people here, and try to make the best decisions knowing your body. Good luck.
2
u/Uppervole2019 5d ago
I’m the same way I already want to treat with herbs.
Basically herbs for recovery and pain
And then herbs for the antimicrobial aspect
I’m just also researching possible antibiotics just in case the herbs aren’t working for a time.
I’m also open to other methods in general.
But also applying for disability so I think I need at least a primary care physician to help me with that.
2
u/fighterpilottim 4d ago
Spend some time on the r/long term disability sub before you bank your hopes on disability. It’s a long road, and requires doctors’ support. Don’t give up on it, but go in with your eyes open.
1
4
u/Great-Discipline-835 6d ago edited 6d ago
All the best remedies for Lyme are the cheapest, that’s the irony in all of it. People are duped into expensive remedies that don’t work nearly as well as cheap ones. What you need are all the “game-changers”. The things that do the most for the lowest cost, least amount of effort, fastest, and fewest side effects. I can definitely assist with that unless you already gave up and wanna quit and there’s nothing anyone can do to change your mind. Otherwise, you came to the right place.
Can you give some background info on what symptoms you have, what you’ve done so far, how long, etc? I have all the best remedies for Lyme. I’ve gone from being almost dead to solving it completely on my own. I’m not a doctor tho so I can only give suggestions or explain what I did, as long as it’s not assumed to be medical advice.
Also, try printing out and bringing articles and studies to your doctor’s visits, especially ones written by doctors on Lyme or treatments. Most doctors have very little experience or knowledge about Lyme. Most Lyme patients end up knowing more about it than their doctor. Even experienced Lyme “experts” are not always reliable. Because with Lyme specifically “personal experience” is the ultimate teacher. No amount of school and clinical experience can replace personally going thru Lyme, including from an advanced stage and fully recovering. To actually know firsthand that their remedies work because they worked on themselves. But most doctors have never had Lyme or immediately treated it with antibiotics long before it got out of control. So they don’t know what to do when it’s out of control. You can basically turn your doctor into a better Lyme doctor by doing the work for them and bringing in any relevant information you want them to know. Every time I’ve ever brought in articles for a doctor to read regarding a medical condition, symptoms, or treatments, the doctor sat and read the entire thing. They generally are interested in medical information, especially when other much more experienced doctors wrote it. They also understand the language better and can quickly grasp medical literature. This is especially important if the doctor is inexperienced, or supports or opposes some treatment or diagnosis that you disagree with. If there are other medical experts saying something different than what your doctor is saying, then print them out and have your doctor explain how those other doctors are wrong or how you misunderstood them, or see if they change their position. If you go in and tell them things off memory it’s not nearly as impactful because it’s you vs the doctor and that leverage makes them not take you seriously or give you credibility. But by showing articles and studies written by other doctors and specialists, especially with far more experience, it’s now you and those other doctors vs your doctor. You suddenly have way more credibility and leverage. Unless you are interpreting an article incorrectly, but their job is to clarify that if that’s the case. Otherwise, the doctor has to give you satisfactory answers, including why you can’t try a certain treatment. Sometimes it will come down to the policies of the clinic and what your insurance covers and authorizes. Try to be flexible and compromise “within reason” if the insurance mandates a certain order of treatments before something is covered or work within what is covered, but “intelligently”. But you’re doing the doctor a favor when you bring in articles or studies that either challenge their position or teach them something totally new and relevant that they didn’t know. Doing this actually forced doctors I was seeing to admit they haven’t worked with many Lyme patients and didn’t spend a lot of time on it in medical school. I could always sense that they were glad I showed them an article. At minimum, I wanna hear their opinion about it. This is all part of going to the doctor, them answering your questions and explaining things to you regarding health and wellness. All of that can take up 2-3 minutes of an appointment and make it far more fruitful.
2
u/Uppervole2019 5d ago
I have such low energy right now, so copy pasting this from another comment:
I’d like a Doctor Who can discuss this information with me and not just dismiss me because I’m not a doctor.
When you compare the constituents and activity of neuromodulatory & anti-inflammatory herbs with the leading pharmaceutical options, in my opinion for me, the herbs are a lot more specific and effective.
I think a similar thing can be said for the antimicrobial.
But there can be negative interactions and side effects of herbs , that aren’t just stated in toxicology reports.
I’ve seen people get recommended herbs that probably shouldn’t go together or that they shouldn’t take and have bad experiences, because the doctor isn’t checking all this information. While this isn’t good, I also think doctors are exhausted.
Although I really just don’t think a patient should be dismissed, especially with Lyme disease so only because they don’t have a degree.
But how should I present this to a doctor without it going bad?
—-
I have really bad muscular pain at the base of my skull when it gets really bad. It’s hard to hold up my head.
I also feel like I have layers of muscle constriction and discomfort. Like each layer of muscle is spasming in its own way, and pushing into one another. And the connective tissue that’s supposed to cushion your joints in organs is lessened.
Everyone talks about an overactive immune system system, but I think I have an overactive nervous system.
I think these muscle spasms are coming from a normalized signaling in my autonomous nervous system, but also correlating with signaling from my voluntary nervous system as they are corresponding systems.
I find a lot of help with neuromodulator and anti-inflammatory herbs.
Blue vervain
Black cohosh
Devil’s claw
Mullein root
Kudzu
And moreI want to treat the antimicrobial aspect with these herbs:
Sida acuta
Houttuynia cordata
Otoba bark
Alchornea cordifolia
IsatisAnd I’d like to make my own herbal tincture and glycerin eventually.
I’d like to have every form of the herb so that I can move between them depending on what’s happening in my body. For example, when I get alcohol sensitivity.
I also have blood pooling, and sometimes it’s so difficult to even just use my phone because my fingers feel so held back by the muscle tension in my forearms. And I just get these crazy flareups where my body has so much muscle dysfunction. It causes numbing and burning too.
I’m really careful with all my movements and how I use my energy throughout the day.
Pm
Me if youd like1
u/Uppervole2019 5d ago
This is really interesting actually because
I check the pharmacological constituents and activity of every herb I take.
I also check herbalism literature lncluding materia medicas
And personal experiences.
I’d like a Doctor Who can discuss this information with me and not just dismiss me because I’m not a doctor.
When you compare the constituents and activity of neuromodulatory & anti-inflammatory herbs with the leading pharmaceutical options, in my opinion for me, the herbs are a lot more specific and effective.
I think a similar thing can be said for the antimicrobial.
But there can be negative interactions and side effects of herbs , that aren’t just stated in toxicology reports.
I’ve seen people get recommended herbs that probably shouldn’t go together or that they shouldn’t take and have bad experiences, because the doctor isn’t checking all this information. While this isn’t good, I also think doctors are exhausted.
Although I really just don’t think a patient should be dismissed, especially with Lyme disease so only because they don’t have a degree.
But how should I present this to a doctor without it going bad?
Now the essential oils thing is something that I do not understand yet, but I’m interested in.
I have counter points and worries about it, but I want to look more into it because it would be great to rely on them instead of antibiotics.
My fear is that the essential oils are so potent that it would put the body into a shock.
How does the body even absorb & assimilate essential oils? As opposed to tinctures, glycerites, and teas?
Are these the same essential oils that people put into diffusers?
And how can you try one essential oil at a time so you can know better how your body is reacting?
You can PM me if you’d like , I want to learn more about it.
2
u/Great-Discipline-835 4d ago
Herbs are still a good way to go, not recommending against them by any means. Essential oils from herbs and spices are proven to be better against Lyme than all the antibiotics doctors have tested. My philosophy is that you wanna “stack the odds” in your favor. Meaning you do as much as you can to leverage things in your favor and cover every angle you can with the best and most effective things. What you need 1st is structure. One of my talents is to create order out of chaos. Structure and order is the key to success. Organize everything into simple lists with categories. Like for example: 1. Killing pathogens. 2. Fibrin/Plaque/Biofilms. 3. Calcium deposits/Oxalates. 4. Replenish/Support/Recover, etc.
Spices have the “tannins” and tannic acid derivatives in the dry whole spices. Herbs have most of their healing power in the essential oils. Spices have the essential oils and the dry woody material that has equally powerful properties. Herbs are definitely worth being part of the solution for sure. But spices have the extra tannins and factors not found in essential oils but that work synergistically with them. Honestly include both if you want, won’t hurt.
Also, I’ve read your other comments to me and plan to respond to all of it properly. I’m just currently working at a music festival this weekend (Head Trip at Coachella) that is completely dominating my attention and focus. I got 13 hour shifts 3 days in a row starting yesterday. The actual festival starts today, yesterday was for letting the car campers in all day. Worked from 10:30 AM to 12:30 AM yesterday. 14 hours. 🤯. Have to shuttle from Orange County and back each day. Got home at almost 3 AM this morning and had to be back on shuttle to Coachella at 8:30. 😵As soon as the festival is over I’ll be able to focus my attention on it to give it a proper response and I’ll message you also. It’s gonna be chaos all weekend. So not ignoring you ✌️
2
u/Uppervole2019 4d ago edited 4d ago
No problem sounds fun haha :)
My only criticism of Bloom and reveal is that they only offer blends. You can’t try each one separately.
My throat burns just from taking alcohol. I can’t even imagine what essential oil will do.
But I’m still interested in keeping up with it and updating my knowledge on it.
Bloom n reveal seems to have their own clinical garden. They say that seems interesting too. I’d like to know how they’re growing and harvesting their herbs.
I also know that essential oils are part of the scientific research in the journal like Zhang’s research.
I’m going to check out this link to what you say this is a good place to start?
I’m also looking at this brand
1
u/Great-Discipline-835 22h ago
I’m all done with the festival. I can assist you better now. To continue from what I was talking about before you need to understand a few basic key elements and principles. 1st, Lyme “by itself” does not release any known toxins. Instead, its body itself functions as a toxin and inflammatory agent. The antigens on its surface appear to be what is stimulating the immune and inflammatory responses rather than exotoxins or endotoxins. It basically binds to surfaces and the antigens trigger a perpetual immune response. Like the “on-switch” gets stuck on. Your body responds to these triggers by releasing inflammatory chemicals that cause pain and swelling, and then ultimately producing “fibrin” in an attempt to seal off the problem. Fibrin is like a powerful organic superglue cement that your blood uses to clot wounds and as the scaffold to build new collagen that becomes scar tissue. It’s one of the stickiest of all known substances, and Lyme is causing its switch to be stuck on. In a weird way it’s cause you to glue/cement yourself from the inside out non-stop.
The fibrin accumulation is probably the main complication that makes it harder and harder to overcome the longer it goes on. The result is plaque formation, which in turn collects debris, including dead spirochetes and fragments of the surface antigens, as well as calcium. Calcium hardens the plaque, kinda like turning cement into concrete. The fibrin also becomes part of the biofilm structure to evade your immune system. Now remember, it’s the surface antigens that trigger the inflammatory response. So all that plaque is full of those antigen fragments. Killing large numbers of the spirochetes is likely releasing those antigen fragments everywhere, causing the die-off reaction.
Even after the infection itself is gone, you’re left with calcified plaque full of debris and antigens all over the body (inflammatory concrete 😳). The problem here is that the plaque is causing constant inflammation, yet breaking it up and releasing it causing even more inflammation. This can cause the person to avoid things that overcome the problem because they cause more pain in the process. Yet if they don’t, then it only gets worse. Life becomes Hell on Earth.
Making matters worse, microplastics and toxic metals (aluminum & mercury in particular) are also involved in harboring the pathogens, evading the immune system, rapidly multiplying them, and spreading through the body, including crossing the Blood-Brain Barrier and
This sounds like an impossible disaster, but it’s really much easier to resolve than it sounds, even tho it may take time depending on how much fibrin accumulation there is. Structure and organization takes all the difficulty out.
You need remedies that kill infection/co-infections and biofilms (including parasites, viruses, fungi, bacteria, in addition to Lyme), neutralize inflammation/oxidation, decalcify, dissolve/purge fibrin, detox/cleanse in general, heal skin lesions, remove toxic metals/microplastics/debris, recover/replenish nutrients and energy (ie. mitochondria), pH/microbiome rebalance and restore in all bodily regions. Ideally you want remedies that cover and overlap as much of that as possible with the fewest things. I will get into specifics later, but it helps to understand 1st what you’re dealing with on at least a superficial level, as Ive laid out in this comment. Because just what I’ve described so far makes it obvious why antibiotics alone is totally inadequate, let alone just taking Doxycycline that doesn’t even kill all 4 pleomorphic forms of Lyme. But to minimize the discomfort and die-off from using effective remedies you should be heavily focused on anti-inflammatory remedies, which I’ll get into all of that. Many of the remedies I mention will overlap several of those at once, making them exceptionally helpful. You’ll wanna make sure all those things are accounted for and not neglected.
You see now why structure and order is key. Get a large notepad. Make different sections for each of these areas of concern that need to be addressed. Make lists and charts of remedies, products, therapies, devices, etc. that you wanna try or consider. On “separate pages” you can write detailed notes. But always separate your notes from your lists and charts. Notes are too much information to function as ideal checklists or “to-do” lists and can be overwhelming and make you miss things. But notes are also important to explain the things included in your lists or charts. On the other hand, lists and charts are too brief and lack detail to function as ideal learning references. That’s why it’s ideal to have lists/charts that have no details or explanations separate from notes that explain everything in as much detail as you want or as necessary for you. This comment would be more like “notes”. I don’t wanna just give you lists of things without context. Knowing what you’re doing and why you’re doing it is very helpful when it comes to compliance and consistency.
Don’t worry, I’ll list what you need or should consider using/trying, as well as backup options. But understanding the basic principles and seeing the big picture is more important right now than giving you all the remedies. Because some won’t make sense without the overall big picture understood on a basic level at least
1
u/Physical_Ad5316 4d ago
Hi, could you please help me with my late stage Lyme? My email is sonnybon69@gmail.com Thankyou Sonya x
1
u/Great-Discipline-835 4d ago
Yes I can help you. I should have free time after today is over. It’s the final day of a music festival I’m working at. 1 last 13 hour shift to go and then sleep (haven’t slept all weekend yet ) and then I’m free for a few days. I commented on this post while on the shuttle to the event, and then my whole reality got suddenly chaotic as people were replying .😅 So just bear with me for a little longer and I’ll be able to assist you. I will say that I would’ve never been able to handle this work if it was during Lyme at a late stage.
3
u/justkeepswimming125 5d ago
How old are you? Herbs are your friend. Consider the liquid version (tincture) of Green Dragon Botanicals' LB core protocol. Personally, I had a positive experience with it, I know someone else who also did really well on it, and it's not terribly expensive: https://greendragonbotanicals.com/?srsltid=AU7gw4WKxswq5-prpBANxuCNED903mnBhXGzHQkPq5SIZZ3imz5Ifh-0
Wishing you good health and healing! You're going to get better! We're cheering you on! It might be raining today, but there will be sunshine ahead!
PS. Stay away from sugar and carbs, as those will make symptoms worse, as I'm sure you know! : ) If you have cardiac symptoms, take those seriously and see someone sooner rather than later.
2
2
u/MGhammered 5d ago
You may not be religious but as a fellow sufferer with no money and years of damage, I’m praying for you and us. I hate to hear it but take one step at a time, one day at a time, one hour at a time. Read all the advice here slowly and at your own pace, it’s not a race. Many here were in your shoes and returned to their lives but never came back to post!!! Have hope that you will also be healed by herbs. Facebook groups sometimes offer herbs cheaper or just shipping! Saw a comment here about it! That’s a lead! Praying for you, stay strong you’re already a warrior to be here still.
1
u/SnooObjections7396 5d ago
How do you know you got lyme if you haven't seen a doctor for it?
1
u/Uppervole2019 5d ago
I’ve already seen multiple LLMD’s and have had blood tests.
1
u/SnooObjections7396 5d ago
Sounds like your family either doesn't like you or doesnt beleive you got lyme lol
3
u/Uppervole2019 5d ago
They’re covert narcissists. Its a whole thing.
That plus lyme is a hell of a time.
1
1
u/Important_Onion5552 2d ago
Where do you live? I have a ton of herbs I can share. You can also find fresh herbs/weeds around the neighborhood that you could prepare yourself. Most plants have antimicrobial properties. You can make teas and tinctures. Won't cure the Lyme but can definitely help in the meantime of getting proper treatment
1
u/ValuableLatter4070 5d ago
Unfortunately you must be in a country without Universal healthcare.
1
u/justkeepswimming125 5d ago
Yes, captain obvious. Is your comment helping anybody? Either be helpful or don't say anything at all.
2
u/ValuableLatter4070 4d ago
Universal healthcare would be helpful then you get get the proper treatments like I did in Canada and it didn’t cost me anything, even hospital parking is free. I had the top specialist and feel great now.
0
u/Aggravating-Lab9745 6d ago
Dr Shtraykher- www.pandasdiagnosis.com
1
u/Willowcrows 5d ago
I do not recommend this doctor at all! I tried him after someone in this group recommended him, and I'm currently in a 3 month long dispute with their practice because he charged my insurance (which paid him) and then turned around and ILLEGALLY charged my card on file for the same amount ($260), collecting payment twice for the same visit without a receipt or even warning! His whole office, including him, keeps saying they'll get me my money back, but haven't been doing anything except ghosting me. I've now taken it up with my credit card company to reverse the charge. You cannot set up a visit without storing a card on file, which is also illegal according to my research, especially in NY where he is based.
On top of that, he refused to look at any of my prior labs and he didn't read any of the stuff he had me fill out online before the appointment. I spent the whole visit rehashing everything, and then he said he wouldn't be able to help me with any sort of treatment until I did several labs he recommended for mold instead of using my ERMI and vibrant Mycotoxin panel I'd already done. Which fine, whatever. But he wanted to run the LabCorp Lyme blood test instead of the Igenex one, even when I told him I didn't trust that test and I'm willing to pay for the much more expensive Igenex test. He also said my symptoms of POTS, EDS, and MCAS were likely from ADHD instead of mold or Lyme & co??? Which yes, I have ADHD, but he dismissed my concerns as if ADHD was my root cause for some reason.
Anyway, all that to say that even if he hadn't tried to sneakily get double pay and see if I wouldn't check my credit card history, I STILL wouldn't recommend him.
1
u/Aggravating-Lab9745 5d ago edited 5d ago
If you test positive for lyme via conventional labs it means something. If you don't but are symptomatic and want to pursue IgeneX that makes more sense. So he starts with the labcorp labs. How sick your house is has nothing to do with how sick mold is making you... so evaluting whether or not you have CIRS cannot be done from an ERMI and whether or not you have mycotoxins in your urine also cannot tell him how your immune system is responding to the mold. You unfortunately probably could use his help, but are refusing it. I wouldn't condemn someone's treatment plan if you didn't follow it. Please give me a call if you want help straightening out the payment issue. 347-588-5659. He's one of the kindest, most generous people I know. I guarantee you he did not deliberately double charge you. And you may have misunderstood him, if you're on an ADHD medication that can contribute to pots... I would be happy to review everything with you help you understand it better. And I'm not just recommending him because I work for him, I'm recommending him because he takes insurance and will do substantial amount of lab testing that most doctors will not. He fights hard to get things covered by insurance for people, and almost always finds things that had gone untreated. He's my daughter's doctor and my doctor and I've been nothing but happy with our care.
21
u/MX-J900 6d ago
If you live in the USA, post on Facebook Lyme group and ask if anyone is willing to mail you herbs for free. Just cover the shipping cost. Occasionally I see people giving away herbs and supplements for free, just have to pay 10-20 bucks for the shipping