Health Update

Hey everyone,

It's been awhile since my last update. I'm kind of stuck as to what I should do. I am not sure if I may be relapsing or just struggling through some residual inflammation or something else all together. Just as a background I have been healthy my whole life and got acutely sick after a trip overseas back in dec 2017. I just got sicker and sicker until I couldn't work anymore and couldn't leave my house anymore then got a diagnosis of bartonella/babesia/MCAS/POTS and possibly lyme in july of 2018 when I started aggressive treatment with multiple abx. It was rough during treatment with many highs and lows and some scares with herxing so bad it would sometimes send me to the ER. Then it gradually got better to the point I slowly started to see my symptoms go away. By may of 2019 i was about 85% symptom free. At that point my LLMD tested me for my bart titers again and it was extremely low and chalked up my remaining symptoms (moderate fatigue, slight dizziness, some slight muscle aches) to residual inflammation from MCAS and pulled me off abx. Since then, I have been on "rehab" mode and didn't see any new symptoms for awhile and was well enough to resume work on a part-time basis and get engaged to the love of my life. Over the ensuing couple months I felt like I was able to handle more and more and so I also increased my work load to full-time. I even started walking the treadmill at the local gym a couple weeks ago. Then about a month and a half ago I started to come down with some on and off chest pain reminiscent of the costochondritis-type ones i had during treatment. Furthermore, following exertion, some of my old symptoms have been returning for brief periods of time (suddenly extremely weak, malaise, chills, muscle aches, anxiety out of nowhere, dizziness) and it has been kind of scaring me. This has only been occurring once or twice every other week or so but concerning nonetheless.

We have a wedding coming up in january and my fiancee is freaking out in case i have one of my "episodes" during the wedding. I'm not sure what to make of my symptoms yet...could this just be residual inflammation that has yet to calm down? (LLMD said it could take up to a year for this to calm down or more) or should I be thinking relapse? When do you know you are relapsing?

It's all muddled now because I've grown acquainted with some of my minor symptoms and learned to ignore them. But I don't want it to get to the point where I have to go to the ER again like before. Any thoughts? If I do require more treatment, I'm not sure I want to go back to abx again as it killed my gut and drove my liver enzyme levels pretty high at some points.

For those of you that are still fighting, you can and will get better. Although I have hit a small bump on the road right now, I'd still say I'm a world of a difference apart from how I was a year ago from now and thankful for it.

In general it sounds like your body has Lyme under control, but it sounds like you have been doing a great deal and need to slow way way way down. What you are describing sounds like your symptoms are coming back, and your body needs help managing everything. Say no to as much as you can, address stress in a very direct way, pay serious attention to your diet and gut health, take an adaptogen that works well for you, and throw in some herbs for inflammation and immune support.

I beat Lyme once, too, and then years later relapsed, beginning with two years of episodes like you describe. I did not take my body's signals seriously enough, so it's great that you are taking this seriously and figuring out a plan. I'm glad you are feeling optimistic, and love is extremely good for your health! But slow down.

I was at 85-90% since April and as long as I fasted occasionally, stayed on a strict dieted, herbal tea, anti-fungals, and lots of slept I was able to "sort of" re-integrate into society and landed a few jobs, more responsibilities, etc. I went from One Goal A day to at least a few things done. And my fatigue was mostly gone but every 2 weeks it would kick in for a few days and I would take a single amoxicilian.

However I realized July-August not fully 100% and found out about Disulfiram here. I jumped on the Disulfiram train about August/September and I went from that to feeling wonderful for weeks. Then about 5 weeks in I had some setbacks due to stress of a new job and stopped. But I started up again. Since then I have been back on the Disulfiram treatment I am almost at week 8. I feel very good, however getting here -- I dipped to a 5/10 from a 8/10. Eventually it went away. Today was a 9/10 or better. You might want to consider very low level disulfiram 62.5mg for 6-8 weeks as a "finisher". if you can afford to go from 85% to 5/10, then the full deal: 62.5mg 3 weeks, 125mg 3 weeks, 250mg 3 weeks, and 500mg 8 weeks. I am right in the middle: 250mg week 2, next week will be 3, and then I will be at 500mg for 8 weeks.

But I feel 9/10, and in the last week or so have been like this most of the time.

oregonhay said...
I was at 85-90% since April and as long as I fasted occasionally, stayed on a strict dieted, herbal tea, anti-fungals, and lots of slept I was able to "sort of" re-integrate into society and landed a few jobs, more responsibilities, etc. I went from One Goal A day to at least a few things done. And my fatigue was mostly gone but every 2 weeks it would kick in for a few days and I would take a single amoxicilian.

However I realized July-August not fully 100% and found out about Disulfiram here. I jumped on the Disulfiram train about August/September and I went from that to feeling wonderful for weeks. Then about 5 weeks in I had some setbacks due to stress of a new job and stopped. But I started up again. Since then I have been back on the Disulfiram treatment I am almost at week 8. I feel very good, however getting here -- I dipped to a 5/10 from a 8/10. Eventually it went away. Today was a 9/10 or better. You might want to consider very low level disulfiram 62.5mg for 6-8 weeks as a "finisher". if you can afford to go from 85% to 5/10, then the full deal: 62.5mg 3 weeks, 125mg 3 weeks, 250mg 3 weeks, and 500mg 8 weeks. I am right in the middle: 250mg week 2, next week will be 3, and then I will be at 500mg for 8 weeks.

But I feel 9/10, and in the last week or so have been like this most of the time.

Wow thanks for sharing oregon. Looks like you definitely are closing in on a definite remission! I have heard of disulfiram for awhile now and it seems to only be growing more popular in the LLMD circles. My main infection is bartonella and I heard disulfuram doesn't have much affect against bart? Is this true? Do you know of people who had bart as their primary infection where disulfiram has helped?