r/Lyme

I was bitten, and had a large, bright red rash show up four days later. I’ve been on doxycycline for a week now and have mild, intermittently joint pain and fever for the last few days. All of my tests including other tick borne illnesses came back negative, but Lyme specifically said that a negative test does not exclude diagnosis when the others didn’t. I only have two weeks of doxycycline and would like at least one more to be safe, but the doctor wants to test Lyme again first. I have no idea what to do, I don’t have that many doctor’s around me to go to.

I realize that people are saying that BVT can take 6-9 months for significant improvement or years for near total remission, but I feel like even at 3 months I should be seeing SOMETHING, but really can't say that I am. I was able to ramp up to 10 stings pretty quickly and made it there by 6 weeks with no issues. So it's not even like I just got to 10 stings. But the brain fog is unbearable and affecting my job and I really haven't seen any indications that I have had any strong herx reactions either. I have had some UTI flares (I'm male and also diabetic) that COULD be related, but that is about the only thing that has flared during my BVT journey. I'm desperate and depressed and scared that this last resort may not be doing much for me.

I made a post about it before, but when you are dealing with chronic lyme infections, your body and brain will be filled with biofilm and fibrin nests/plaque.. These plaques block access of herbs or abx to tissues and the dreaded bacteria/parasites. Treating with just abx or herbs at this point, without removing biofilm and nests, will stop your progress.

Additionally, lyme and bart reduce bloodflow by suppressing nitric oxide production. Reduced bloodflow also means reduced access to tissues and bacteria/parasites, so it is necessary that you increase your bloodflow.

So the break through these blockages, you need 3 supplements added to your protocol.

1.serrapeptase= break biofilm

2.lumbrokinase= break fibrin nests/plaque

3.pycnogenol= increases bloodflow

This will make your herbal or abx protocol much more effective.

If possible also, look into ways to move your lymphatic system, as the bugs and toxins there can also block its flow, which will hamper with elimination of toxins and dead bacteria, making you feel miserable.

Walking, exercise, dry skin brushing, epsom salt baths, using a vibration plate can help moving lymph.. Perhaps there are some herbs which can help with this but I didn't look into that yet.

I am going on holiday next month but I am moving from abx to a herbal protocol. I am a bit nervous about taking so many caps through security, especially when I don’t have a prescription for them. Does anyone have any recommendations or experiences etc?

I do not comprehend the medical community’s dismissal towards the chronic infection hypothesis. Like why the fuck did borrelia evolve to create biofilms and round-body forms were it not to indefinitely persist in hosts? We’ve found it can persist in rhesus monkeys after antibiotics, but since we cant really check in the same way in humans, theres “no evidence” that it persists in us, and is thus very unlikely to be true. Am i the only one to whom this logic seems bizarre?

side rant The phrase “no evidence that” is very misleading. The phrase can be applied to two very different circumstances: 1) we checked and it was false 2) we havent checked yet.

So often when lyme comes up this phrase gets weaponized as the ultimate rebuttal. The speaker makes it sound like it’s (1) when it’s actually (2), and in general they dont seem to appreciate that there is even a distinction between the two cases. Presenting the evidence as so black and white does not reflect the true uncertainty surrounding the situation, and is frankly a very strange way of thinking about the world.

Had a tick at the base of my neck. It felt like a scab, so I peeled it off. If I was able to dig it up with my nail/peel it off, do we think it was fully attached to me?

What are next steps? I heard PCPs are useless and I should find a specialist? Also, what resources have you used to "test" the tick? We still have it and it is in the freezer dying now.

Treatment learnings

- Some treatments are easier and more effective person-by-person. Dapsone for example was hard on me but I saw clear results. What worked for someone else, may not work for you.

- Abruptly stopping medications may cause bad flare-ups. Talk to your doctor before you do this and come up with a plan.

- You may be more responsive to some medications than others. Some medications may be toxic for you. Genetic tests (whole exome) can provide a lot of information on this.

- Commercial supplements may not always disclose how much of an active ingredient they have. You may literally be consuming mostly cellulose. Be an informed purchaser.

Work learnings

- Disability accommodations may make a huge difference in your ability to work.Some possible accommodations that may help you are documented here: https://askjan.org/disabilities/Lyme-Disease.cfm .

- People may not always be empathetic, and may put you in situations that endanger your health without realizing. I learned that being subtle in these situations does NOT work. You may have to be more dramatic than you would like in order to get the point across.

- Some days with Lyme at work will just be garbage days. For me, just getting something done, literally anything, can turn those garbage days around a little.

- It is hard for me to be proud of my work when I can't remember doing it because of brain fog. This is something I am still working on.

Social learnings

- For me, I have learned that people will not always treat me with the same level of empathy and care as they ask me to treat them.

- Social stresses for me can have a similar impact to physical stresses, and can trigger flare ups.

- Finding friends who get it is important.

- Friendships for me need to have a deeper foundation than just having fun together, or else those friendships will evaporate quickly when you are in a flare phase.

Miscellaneous

- For me, I always need to take prophylactic antibiotics and request antimicrobial gels during dental procedures (even deep cleanings). My immune system cannot handle dental procedures.

- Lyme and Bartonella can have impacts on mental health. Plenty of articles and even research papers out there on this.

- I feel my deficits clearly, every day I don't live up to my expectations feels like a failure, and the suffering Lyme causes can be quiet and invisible to others. I don't want to change my expectations or dim my hope, I just keep on keeping on with the wish that better days are ahead. Everyone manages their illness differently. But for me, the hope that maybe tomorrow I will wake up different, better, and ready to go keeps me making better decisions, taking care of myself, and moving forward.

I was given a 10 day course for chronic babesia (I know) I’ve been really inconsistent with it unfortunately so it’s been spread out over the course of 2 weeks, but my fatigue is awful. POTS symptoms worsened especially after mepron dosing. My mental health is shit right now too. Any thoughts?

Has anyone solved this key symptom and if so, how?

The amount of issues I have above the shoulders is insane. Head pressure, blurry vision getting worse, numb neck and face. Then all the neurological and cognitive problems too.

Has anyone solved the neck issues that often come with this illness?

Someone was able to treat when even breathing is exhausting all the day ? Bedridden all the time, how can we tolerate treatment when you are too weak... someone was in the same case ?

Hi, if you had significant eye pain, on both movement and when not moving the eyes, did it turned out to be optic neuritis, or was it the nerves inerviating muscles or was it something else?

I’d like your thoughts on this. My daughter’s Lyme doctor said that she should treat for mold first. That could take 9 months or longer.

Her np (recommended by ILADS) says that Lyme should be treated before mold toxicity.

Which is the correct answer & the reasoning behind it?

Is there a protocol that works?

My daughter is very sick and I want to do what is best for her.

Thank you so much!

Does anyone else experience intense pressure and headaches after eating? No matter what I eat (so I don't think it's blood sugar related), within an hour or 2, I get terrible upper body stiffness and headache/head pressure. It only lasts for about an hour and then it passes

Five fucking years undiagnosed.
Two years of herbal treatment.

I feel like the core parts of myself have been stripped away from me
I’ve been a selfish angry depressed obsessive fucking mess for the last five years and I’m so fucking scared I’ll never be who I was before. This is so unlike me. I’m so patient and gentle, and understanding and now I could rip someone apart with my words over any minuscule slight. I’m so disappointed in myself. I’m so ashamed of my behavior. I’ve hurt people around me, I’ve hurt relationships, I can’t stop thinking about all thrshit I’ve said and did, I can’t stop wondering where ny life would be if I hadn’t become this person. I’m so worried it’ll never end. I’ve been doing this fucking treatment for over two years now and it’s gotten me 40% better but I’ve plateaued and my brain fog has gotten so bad the last month. I’ve gotten into four car accidents in the last two years. Im barely getting through college. I’m so angry all the time. I can’t fucking do this don’t know what to do. I stopped seeing my naturopath because it was so fucking expensive and so I’m trying to make it work on my own. My guitar skills have diminished. I’m so tired all the time. I feel like I’m constantly stoned and all I want to do is smoke weed all fucking day just to hide it. I’m so lost.

I have constantly appearing blood spots on my body just under skin surface. Seems like something is rupturing my capillaries, causing tiny hematomas. What can it be?

Just two examples on the tips of my fingers (a bit blurred) but the're more.

https://preview.redd.it/gxc1voo96a2h1.jpg?width=2410&format=pjpg&auto=webp&s=679a7f925ac6e048e2aa5d0d87d88b4589b0bd9b

I’ve just ordered the Armin tickplex plus and realised it only tests for B.henslae..

Is this because it’s the most common strain - is anyone actually negative for henslae and positive for a different strain? Gahhhh

For reference I’m in the UK :)

Update: I convinced them to do some research on LLMDs so they can get more accurate information and recommendations. I'm still concerned my prescription will end before any moves are made, but this is a step in the right direction.

So when I got bitten, I started having neurological issues very quickly. Constant brain fog, persistent derealization at night, feeling of pressure on my head all the time.

It was around 3 weeks until I got a blood test and started doxy, though, even after I described my cognitive symptoms, the doctor still put me on 10 days. At the time, I didn’t know this wasn’t the amount you are supposed to receive when Lyme gets to your nervous system.

As you might be able to tell, I am a very paranoid symptom-searcher, and getting Lyme didn’t help at all. I actually suspect bartonella sometimes, mainly because of the intense anxiety and irrationality that showed up suddenly when this all started.

Anyway, I told my parents about the standard 14–21 day treatment for neurological Lyme and even showed them the official CDC guidelines, but they are still persistent that the doctor was right. I am a minor, so I don’t have much control over anything.

As of now, I am around 5 days into my doxy prescription. I am aware that if I stop my doxy when the infection isn’t fully cleared, it can rapidly multiply again and make everything worse. No matter what I do, I can’t get them to budge.

It really is sad how understudied and mistreated Lyme is. So many doctors aren’t trained well enough in this field, and it’s surprising because it’s such a common disease. I wish I could get an LLMD but my parents won't let me do that.

When I was younger, I was always taught that Lyme was just an easy treat-and-forget thing, but now I realize how significantly it drains your mind and your body.

I know I am lucky to have caught this so early, but because of the extremity of my symptoms it is really scaring me. I just for for reassurance and maybe advice to deal with this.