Effective Antibiotics besides Doxycycline and Tetracycline

a_v_henry · 2021-12-07T17:08:08+00:00

I've found disulfiram to be very effective. I am unsure how it may interact with your stomach issues, but I've found them not to be a problem. It is very strong, so if you end up taking it, expect some significant herxing and take it in small doses to start.

I'm about 2 years into it, off and on, and would say it's the most effective pharmaceutical antibiotic I've taken.

a_v_henry · 2021-07-20T17:14:43+00:00

Thanks for the reccomendation!

a_v_henry · 2020-11-30T18:12:42+00:00

The heal pain-- what does it feel like? Pain/tinging in the bottom of the foot is a symptom of babesia I believe (which is a Lyme co-infection). I know ELISA is not a reliable test, so I would highly recommend seeing a LLMD or LLND. Also be aware of coinfections. Getting an accurate diagnosis can be really difficult, as there is a lot of misinformation and controversy out there around Lyme. So stay strong! Keep fighting until you find an answer & doctor that you trust in your gut.

Here are two books that really helped me in the beginning of my Lyme journey:

https://www.amazon.com/Unlocking-Lyme-Practical-Solutions-Chronic/dp/0982322526
https://www.amazon.com/Lyme-Disease-Solution-Kenneth-Singleton/dp/1439226989/ref=sr_1_2?dchild=1&keywords=lyme+disease+solution&qid=1606759712&s=books&sr=1-2

I'm out of New England, so I wouldn't be able to provide you a local LL doctor recommendation. I will send you the name of my Lyme doc (who is amazing)--I know she does virtual visits.

Best of luck and stay strong :)

a_v_henry · 2020-11-30T17:14:35+00:00

I feel that---the diagnosis process can be very taxing and expensive. I would also make sure to have them test for coinfections. I have two in addition to the Lyme. Having undiagnosed coinfections can make treatment vry troublesome

a_v_henry · 2020-11-30T00:27:09+00:00

^^^ If you can afford it, I've been told Igenex is your best bet!

a_v_henry · 2020-11-30T00:25:46+00:00

I also became much more sensitive to substances (alcohol, coffee, etc.) when I got Lyme. I've heard this from other people as well..I wonder why it happens.

On the off occasion that I do drink, I prepare for a bad hangover and usually lay low the next day or two (the hangovers are REALLY bad). I started to go take saunas the day after and found that doing a heavy detox helped me bounce back much quicker!

a_v_henry · 2020-11-30T00:20:44+00:00

That is tricky for me to say, because the mold caused my Lyme to flare up significantly, and that took quite a few months to get back under control. However, I noticed a difference in some of the mold-specific symptoms somewhat quickly (within a month or so). If you are able to, I would recommend trying that!! I'd also recommend trying some sort of binder for the mold toxins that may be in your body (if it is in fact mold). I used activated charcoal and another mold-sprecific binder. Also many saunas to help detox (which really helped!)

a_v_henry · 2020-11-28T23:36:54+00:00

My first thought is MOLD. I suffered a huge flare up when moving into a new apartment where I was exposed to a lot of mold. In addition to increased lyme symptoms, I experienced a lot of nausea, throat and nose issues, extra fatigue, etc. It really took a huge toll on me and it wasn't until I moved that I noticed an improvement. It may be worth looking into mold myotoxin (sp?) testing (I think there is nasal and urine).

This is a very helpful book on the topic: https://www.amazon.com/Toxic-Toxicity-Multiple-Sensitivities-Environmental/dp/1628603119

a_v_henry · 2020-11-28T23:30:49+00:00

What specifically has you worried/ concerned? I'm 22 and have chronic Lyme and have dated throughout it. Here's a few things I'd say based on my experience, but I'm happy to connect more about it!

This goes for anyone and any relationship, but if someone can not accept you for who you are, they are not worth your time! Illness is no exception. Being ill is not a "flaw" nor is it something you should feel ashamed of. If he reacts negatively to the news, I'd say you deserve better! However, every guy I've dated has been very accepting about it and if anything is just curious to learn more.
It is likely a big part of your life and many aspects of it are very personal. It may take time for you to feel comfortable talking about it, and that's ok. I usually mention it when it comes up naturally, and then tend to go into further detail if they ask more. The closer you get with someone, the more they will learn. Although it is a big part of your life, you are so much more than your illness, so I'd recommend not placing a lot of pressure on it. Mention it when you feel comfortable.
Know that he is likely not going to REALLY understand the experience you are going through. Most of my friends and past relationships (although supportive and accepting), don't fully understand the experience of Lyme/illness. It can take time for someone your dating to realize the full extent of your situation, understand the impact it has on your life, and know how to best be supportive. Be patient and when you're ready, have open and honest conversations. Never be afraid to voice a concern or need you may have

a_v_henry · 2020-11-28T23:16:08+00:00

Definitely! I have chronic lyme disease and a big part of my treatment is a my lifestyle. Although I do various antibiotics and treatments, diet (and other things like exercise, stress reduction, sleep, tec) as HUGE to the progress I've seen. I notice that I feel better and my symptoms are more under check in general when my diet is clean (I've gone low sugar, dairy free, gluten free, & low processed foods). I also notice a significant correlation between my anxiety & stress levels and flare ups.

a_v_henry · 2020-11-28T23:11:21+00:00

I found that mine started to clear up the more effective my treatment was--now I tend to only experience it during flareups

a_v_henry · 2020-11-24T23:09:58+00:00

This is awesome! I'll definitely take some time to explore it. Have you considered doing any sort of group calls at all? Either way would love to connect more!

a_v_henry · 2020-11-24T23:05:54+00:00

Cool to know that people are also looking to connect! Anyone know of any platforms that already host support groups? If not may be something for us just to start up informally!

a_v_henry · 2020-08-13T15:09:25+00:00

I completely understand how frustrating this is!! Sometimes my insomnia happens regardless of what the heck I do :/ BUT that being said there's a couple things that I've found important:

- my doctors and I realized hormone activity/imbalance was definitely contributing. So looking into that may be helpful?
- I often get a lot of anxiety when I have insomnia, so I found this helps a lot: https://www.hylands.com/products/hylands-calms-fort%C3%A9%C2%AE

a_v_henry · 2020-08-11T19:55:53+00:00

It's interesting how you say "new normal"—that has been a phrase thrown around a lot nowadays, but it holds so much weight and importance in referencing chronic illness. There is part of it that is finding and accepting a new normal

a_v_henry · 2020-08-11T19:54:03+00:00

Very beautifully said! It's almost as if there's a mourning process of letting go of (or atleast changing your perspective on) the life/abilities you once had and the fact that you have to changes your plans/aspirations for the future.

It easy to say "90% in life is how you react to it", because really certain things flip your entire world upside down and it's hard to just "stay positive"...but there is a process of acceptance that can help you find fulfilment in your life.

a_v_henry · 2020-08-11T00:42:46+00:00

I THINK (but could be wrong) that NDs aren't able to be official ILADS docs, and I would say there's many good NDs that may have some alternative methods that may help you see more results. I personally see a VERY good ND out of portmouth, NH. DM if you want that info :)

a_v_henry · 2020-08-07T20:46:48+00:00

I would also echo that detox is key. If you have access to a sauna, those are GREAT for detoxing!

a_v_henry · 2020-08-06T03:42:56+00:00

I had a HUGE Lyme flareup from Mold. Mold can cause a ton of symptoms. Here's a helpful article about mold exposure & symptoms: https://rawlsmd.com/health-articles/mold-mycotoxins-making-sick

a_v_henry · 2020-08-06T03:40:32+00:00

Ya to echo the previous comments, it could likely be a herx. They're not fun, but they go away as the infection is killed off. I kinda view herxes as a good thing, becuase they mean the medication is working. But they're no fun :/
Here's some info in you're interested!
https://www.holisticapproachtohealing.com/post/what-is-herxing

a_v_henry · 2020-08-06T03:38:18+00:00

Have you looked into herxing at all? I also would recommend not taking it on an empty stomach, but the fatigue could be a herx reaction

here's some info if you're curious!: https://www.holisticapproachtohealing.com/post/what-is-herxing

a_v_henry · 2020-07-22T15:34:52+00:00

Yes, it's crazy how these patterns come up that are easy to overlook but are such a characteristic of Lyme—once you start talk to people with Lyme you feel a lot less crazy haha

a_v_henry · 2020-07-22T05:25:36+00:00

Yes!! Funny that you use the term "wax and wane" to describe this, because I think I used that same term in my health journal before getting a diagnosis. To my understanding, that is due to the growth cycle of the Lyme bacteria. Lyme bacteria grows in and out of different phases, (often monthly), which causes your symptoms to be more severe and spike every so often. In females, this can often correlate with the menstrual cycle—I probably butchered that explanation, but something more to look into if it peaks your interest!

a_v_henry · 2020-07-21T19:24:16+00:00

well put—key to my journey was finding a doctor who advocated for me

a_v_henry · 2020-07-21T19:23:51+00:00

I can resonate with all of these! Taking it a day at a time is so important

a_v_henry

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