Got Lyme about 6 weeks ago, on Doxy for 3 weeks now, not getting better...any advice?

Backstory if you’re interested:

https://www.healingwell.com/community/default.aspx?f=30&m=4129222&r=x


Basically I thought I had no chance of contracting Lyme but 3 weeks after the unexplained bruise I still felt fatigued and had a rapid heartbeat so I went to a LLMD who prescribed me 400mg of Doxy daily while we waited for the blood tests. She said I’ll take the doxy for a month; symptoms will most likely go away and hopefully I’ll never have to see her again. A week later my Quest test results came back with a positive for rocky mountain spotted fever at a low titer of igg (LLMD said she doesn’t know if it’s a recent or past infection, I don’t fully understand what that means), franciella is weakly positive (LLMD said that is just cross reacting with RMSF, don’t understand what this means either) and for the Lyme test band 41 came back positive (all other bands were negative) but she said I can take that as a positive result for Lyme.

But 3 weeks into the doxy and I’m feeling the exact same. No improvement (also I don’t believe I’ve gotten worse). Went to the LLMD to get more accurate tests done for co-infections last week (igenex and galaxy labs) and she was surprised I wasn’t getting any better and she prescribed me Bactrim in case I come back positive for the co-infections (the co-infections from Quest were negative). I started taking Bactrim on Friday. So waiting on those results now.

My symptoms are:

Fatigue

It’s way worse M-F when I’m in the office as opposed to being at home after work or at the weekend, where a lot of the time my tiredness levels feel normal (I guess it has something to do with having to concentrate and staring at a screen all day). I’m sleeping pretty well at nighttime. I get tired in the office between 10:30am-11am everyday like clockwork.

Rapid Heart Beat

My heart rate is anywhere between mid-70s and mid-90s bpm when sitting and can go up to 130 (even as high as 160) when taking short walks but it drops down to my normal resting of 67bpm when I’m asleep, it’s bizarre.

Rash

I have a hard to see vein like rash developing on different parts of my body. I initially noticed it on in the inside of my left elbow but its spread to both arms, ankles, chest and nose. LLMD wasn’t sure what it is so has referred me to a dermatologist who I’ll see later today. The rash first started appearing as soon as I started taking the doxy I believe but it’s still spreading very slowly.
I’m also getting a lot of acne spots all over my body which I thought is unusual since I thought that would be the one good side effect of doxy.

Dark eyes

After a full day in the office, I look like I haven’t slept in days with dark circles around my eyes. But about an hour or so after leaving the office my eyes go back to normal.

Chills/sensitivity to cold

I get goosebumps and feel cold frequently; this is weird for me as I’m usually to opposite and too hot most of the time. To be honest, this might be the one thing that is improving, in the last week I’ve noticed this less.

Pain in left knee (where the bruise was)

I’ve always had knee pain and stiffness in my left knee on and off but it’s been worse in the last 6 weeks. My knee has actually been pretty good the last 3 days and feels mostly 100% right now but it’s hard to say if this is Lyme related or not.

Twitching in muscles

I get twitching in my arms, legs and mid-back muscles


Any advice you could give me on additional vitamins I could be taking to supplement the antibiotics? I’m currently taking a probiotic and NAC. I've seen people mention salt and vitamin C, does that interfere with the antibiotics?

After the LLMD giving me the high odds (80%) I’d be ok after 4 weeks of Doxy and her being surprised I haven’t improved 3 weeks into the treatment has me a little depressed and worried that this isn’t going away. Mentally I’m struggling to keep it together. I know I posted a lot but any advice you could give on any point or symptom, would be greatly appreciated. Thanks!

I just want to comment on what you mentioned about certain symptoms coming on at work and leaving when you leave work.

Are you working in a place that has mold, water damage, or a lot of chemicals or fragrance?

Girlie said...
Is the rash like streaks ?
Lines?
Or stretch marks?

That could be Bartonella .

Is the bactrim going to be added to the doxy?
Bactrim can be effective for early cases of Bartonella.

It may just be taking awhile for your symptoms to go.

Are you doing 200 mg twice daily of doxy?

The rash is like broken blood vessels. Dermatologist I saw yesterday, didn't seemed concerned about it which is a relief.

LLMD gave me bactrim last week as a precaution as i wait for the other results to come back. With 4th of july next week, i presume i wont get the results until the week after.

Yes, taking 200mg of Doxy daily.

Hopefully it just takes a little more time. It sucks not being able to enjoy the good weather but the alternative is a lot worse.

LymeDontKillMandysVibe said...
I’m so sorry you’ve been struggling but looks like you took some quick action and i’m grateful you have the resources to get testing and treatment.

I had zithromax, cipro and penicillin triple doses for 14 days and it made me go from bed bound to feeling completely normal for one glorious month before I was right back at where I started. It hasn’t been anything but long patient regimes of pulsing lower herbal doses of antibiotics and antimicrobials and detoxing a ton that got me significantly true results.

everyone’s body is different, but one thing remains pretty typical: the recommended doses of antibiotics aren’t enough.

If I could go back when I was first taking abx I would detox more!!! because I didn’t know to do any of that with conventional abx. I had such a horrific herx it literally almost killed me.

the mental part is the hardest part, stay optimistic, and know you are not alone! I love art journaling to help me when i’m feeling depressed and anxious. i’m so proud that you are able to work during this time, that is huge! Please take care of yourself and don’t push it too hard.

good health wishes

My 4 weeks of Doxy are up on Monday and my symptoms haven't subsided. I'll email my LLMD today or tomorrow telling her and i presume she'll prescribe another month of Doxy, it sucks.

Yeah staying optimistic is huge. The days i feel positive its a lot better, the days i don't I'm way worse. I think my anxiety has a hand in a lot of my symptoms, the better i get that under control the better chance to real see if my symptoms that are Lyme or RMSF related are going away. Unfortunately its easier said than done.

I've battled with whats anxiety related and whats Lyme related for the past couple of weeks. From what i've read online my Lyme symptoms should be hitting me way worse. I have a tiredness most of the time but rarely exhaustion. Sometimes i think in my head that, i've beaten the Lyme and all my symptoms are anxiety related but then i'm sacred to finish the antibiotics too soon and not fully crush the lyme. Realistically i do feel i still have strong symptoms that are Lyme related but i'm scared of the point where i can't tell whats normal tiredness or what unnatural tiredness and i have to make a call about continuing the antibiotics. Hopefully what i said there makes sense

Post Edited (sdot1985) : 6/27/2019 10:04:42 AM (GMT-6)

Anxiety is the worst. Honestly, I was more crippled from my anxiety than actual lyme symptoms at times! Under the covers, can’t breathe, don’t talk to me, everyone I know just died kind of level anxiety. And that’s coming from someone who lost both of her little brothers in an accident 2 years ago my my brother in law just committed suicide in april. I have lost my share of people, but the lyme anxiety is different, more impending doom than even that.
Honestly, i’m an unashamed CBD oil user and it has given me a way to not fix, but mask my anxiety. My opinion why CBD works for my anxiety is that it is actually nervous system caused anxiety, not all in my head. I definitely notice when I don’t take it. And it is legal, safe and really really healing for your gut.

Girlie said...


oh - so only 100 mg twice daily?

I was asking if it was the lyme treatment dose of 200 mg twice daily.

Sorry i miss-typed. To clarify for doxy, i'm taking 200mg twice daily so a total of 400mg daily.

I'm also taking 160mg of Bactrim twice daily so a total of 320mg daily.

Just worried that i've been taking 400mg daily of Doxy for over 3.5 weeks now and bactrim for a week and i'm not getting better. I need to update my LLMD with my status. I presume she's going to prescribe me with another month of Doxy. Is there anything else i should ask her for?

Also i'm petrified that I no longer have acute lyme and we are slipping into chronic lyme territory and this is going to be a life long problem.

I think the research is mixed (and somewhat lacking) on the weed question. Some say the antibiotics for which grapefruit is contraindicated are also contraindicated with cannabis. Others say that cannabis inhibits immune function (hence its helpfulness for autoimmune disorders) and so in cases of acute Lyme especially should not be used. Others say that cannabis alters certain liver enzymes that help to process antibiotics, making them less effective. And some find it very helpful for Lyme recovery! And there's no question that it helps with symptoms. But there's very little research.

I tend to be concerned that opinions about cannabis are based on random strains people purchase from goodness knows where for recreational use, as opposed to good stuff used medicinally (known ratios of CBD and THC, known properties, known milligrams, known origins and growing conditions). I think (as with anything we support or ingest) the source matters. A strain you select on Leafly and obtain from a local organic farmer probably will be better medicine than the stuff you get from the neighborhood weed dealer and their unregulated suppliers.

The form might be an issue, too. Might be better not to smoke anything, but rather ingest it in other ways.

Most doctors know that cannabis has legitimate medical use these days, but if they don't know much about it, then I assume they will tell you not to use it. That said, most of them probably wouldn't discourage you from using CBD-only products.

This could be a fun topic for a separate thread, and you'd get more opinions that way. Cannabis comes up on here a lot, so search the archives.

Re: chronic Lyme versus acute Lyme, I'm not sure is there's an exact cut-off, but six-ish weeks into the illness is still considered very early, especially since you have begun treating it already. If you are concerned about not seeing more improvement, then explore the plethora of tick-borne diseases. You may have a co-infection (or five) that are not going to be addressed by doxy. Definitely don't push yourself in any way, physically, mentally, or emotionally right now. There definitely is hope with this illness. People definitely do get better. Especially people who know when they get infected and can treat right away like you!

May you find a great LLMD very soon!

saraeli said...
Definitely don't push yourself in any way, physically, mentally, or emotionally right now.

I had just recovered from a neck/shoulder injury when i got the bite. I have stopped doing my PT exercises and my neck is starting to get sore again. So i need to get back into doing some light exercises at least. Is it advised not to do anything over moderate exercise?

I had been doing yoga once or twice a week as a substitute.

Exercise is fine if you tolerate it! Just don't push yourself to do more than feels comfortable, or risk wearing yourself out at all. Many of us have post-exertional malaise, which means we exert ourselves and feel okay but then pay for it roughly 24 hours later with a crash. Because post-exertional malaise can set in a day or even two days after the strenuous event, it takes some people a long time to connect the dots. Strengthening for PT makes a lot of sense, but I would advise against aiming to "feel the burn" or increasing your heart rate more than a leisurely walk does. So do your PT to fix your neck injury, but don't train for a marathon! Some people with chronic Lyme find that they can handle normal levels of exercise, but many of us can't, and I think it's not wise in acute Lyme, when the last thing your system needs is more things to repair and figure out. Yoga is a great option, and other adaptive forms of exercise like qi gong or tai chi. If you find that those things are too strenuous at any point, then use a porch swing, trampoline, massage, dry brushing, stretching, craniosacral therapy, sauna, or anything else that gets lymph and blood circulating. Sounds like you are being responsible. Hope your soreness subsides soon!

sdot1985 said...

Is there anything from my account of the weekend that i should mention to the LLMD? Is it weird that i have periods were i feel 100% normal and then the next day i'm exhausted?

I would mention all of it. Emphasize what was not typical for you pre-Lyme.

Thanks.

I'm still in a bit of denial about the whole thing as i don't have a 100% confirmation that its Lyme and sometimes i feel 100% normal (although those times are not as frequent as feeling tired), i keep hoping its something else as i'm not getting much better and the antibiotics which were supposed to be the cure are not working as well as i thought they would. I only have slight improvements in certain areas. My heart rate and fatique which are the biggest symptoms are still mostly the same.

I'll mention it all to my LLMD.

I wanted to write my story(6 years back) but I am so lazy to do that. I never got myself tested for lyme but the place I lived many got positive lyme and including my son. When I got this out of blue with no visible mark or anything and just sitting on computer, first time I felt shock in my spine that radiated to head. Next thing insane anxiety "what happened to me". Went to straight ER to find nothing all normal. As this random spike continues to happen over next weeks, my legs feel very tired exhausted and one time when I was waiting in ER, I could not even stand up and that freaked me out. Oh well Doctors said I have missing heart bit. Still trying to figure what is wrong with me, next couple months I could not sleep at all, dark circles under eye. I had brain fog all over and world always look weird like tilted, when driving car I had to be so focus that I would not crash. Worried about my heart and zero clue what is going with me Doctor gave heart monitor for my sudden racing heart and had to call a number to check if my heart is good or not. That increase my anxiety exponentially. My normal body weight always felt like I am so heavy and my legs have no strength. I got socially isolated and just always worry when I am going to die what will happen to my kids. This was going on for four months with no improvement and finding no interest in anything. finally, I had one time stress test for my heart and I was forced to run and surprise I was able to run. Well, that helped to get my lost confidence about my body that heart is still good. During this episode I went to Doctor several times and one time when visited doctor he said there is nothing wrong with me you have anxiety and dont come again over and over. Also, one time got antibiotic z pack and that is it. I also recalled my knee had some trouble if not so much. But, zero clue what is wrong with me. Having some confidence about my heart I started walking on treadmill and still worried when the spine shock will come again. As I walk on treadmill I actually believed in one thing that my heart is good and I can walk. I never felt good after walking but assurance that my heart is functioning and I am not going to die. Later, I started increase intensity of walking with uphil and trying to keep my heart rate 140 to 150 and not cross and sweating profusely. As months passed I started to forget about all this and continue to do my exercise regimen. Meanwhile I took few supplement like NO and Coq10. Fast forward today I am perfectly fine and zero issues. It took me around 2 to 3 years to get complete normal. I never took any antibiotics and never got tested since I had zero clue. why I felt today that I could possibly had lyme because I saw one person posted exact same story that I experienced and she had lyme. When my young 8 year son got lyme then I started researching more what is this thing. My son was treated with Doxy and he mostly good after a year but his heat sensitivity is still there (We did cowden for him three months), I encouraged him to play more as much possible and give necessary supplements and EO massage, sliver hydrosol etc. He is doing fine but not fully 100% but I know this takes time and eventually will pass. There are atleast 5 to 6 people where I lived(woburn,Mass) got lyme. two kids including mine (positive test) and 2 adult(positive test) and two like me un-diagnosed with out of blue anxiety attack. Just trust your body and continue to work and slowly try not to worry to much. You will get it fixed eventually.

for my son now 8 year then Doxy worked somewhat. His antibiotic started after 9 days of rash since doctor could not figure what is it since he got in February. After another rash showed up they immediately gave him doxy and he tested positive for lyme in Feb winter months last year. I did cowden for three months for him after doxy but not enough. I could not reach to detox cycle since he got sick. Since I was so worried about trying all this may put him in danger since he was so young. but I continued other less danger things silver hydrsol and other supplements but his heat sensitivity was driving me nuts and cold all of sudden and hot. getting sick every now and then and not recovering properly. That is when I started EO based Dr. zhang article
https://www.jhsph.edu/news/news-releases/2018/essential-oils-from-garlic-and-other-herbs-and-spices-kill-persister-lyme-disease-bacteria.html
I was trying to figure what is the best way I can deliver this oils in body, after researching I came up with foot massage. Ever since I started foot massage he hasnt been sick more then a single day. Playing hard core for atleast 35 minutes before he gets heated. when I asked where is this heat coming he said internal. That is when I realize toxins from workout must be removed. I found sparga from cowden does good job for his heat sensitivity, he can now tolerate playing in 80 degree temperature without being fatigue. Recently, I added sealantro from cowden as well, since it has all things to mobilize toxin. He is at 90% of his previous capacity. So, overall I use Coconut oil as carrier , Garlic oil, Thyme oil, Cinnamon bark mix and apply to each feet 15 min every other day. For toxin and Liver - Banyan botanicals liver formula, jorrows reduced gluthathione, sparga, sealantro. Absolutely, no antibiotics and good probiotics and 7.6 ph water for drinking. I think you have very good chance for full recovery before this things sets in. EO method will not mess-up your gut but still deliver solid equivalent to antibiotics. My advice just exercise and sweat out all junk if you can and supplement liver for detoxing.