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Hey guys
Just saying hello again. Its been about 7 months.
Things have gotten bad. Lyme ELISA positive through public health ontario, positive CDC blot from igenex, positive bartonella titre through public health at 1:128. Yuck.
Tried 30 days of doxy. Initially it helped, but is doing nothing now.
Saw a very famous lyme doc in CT, he is caring for me now. Wants to try tetra for a while.
Labs declining - platelets dropping, WBC dropping - I think this is likely from the abx and/or infections but I noticed on here a lot of people have this with treatment, and I did see a heme-onc who said for sure abx can do this and doesnt think anything else is going on. Lyme MD says sees this all the time, didn't even bat an eyelash. Said my case is so classic for bartonella.
Haptoglobin also below detectable limits - very strange. Unlikely hemolyzing as not anemic, apparently some people have genetically low haptoglobin and the hematologist didn't care whatsoever about that.

This illness is so weird. It has had the most undulating course. I had weeks where I was running upwards of 30k with no issues. Writing manuscripts. I am lifting more weight than ever. But I am back to feeling like I have the flu every single day and am fighting through it. I wake up every day and feel like I have been hit by a truck or didn't sleep. Waves of sweating for no reason. Random shooting pains. Weak. Ugh.

Tried all sorts of supplements. Turmeric, vital plan, resveratrol, etc. Was on so many I wanted to make sure wasn't damaging my liver - and am not, thank goodness.

Thinking about taking a bit of time off all abx and supplements to see how I respond. Struggling to cope with this mentally. The stress of being sick all the time is elevating my BP.

Your very empathetic MD PhD lyme patient.
JDB

Good to "see" you again, JCB but so sorry you are dealing with the usual nonsense that having these infections means.

Krimpet echoed my thoughts about detoxing. It really makes a difference in our ability to manage treatments.

Here's a link to a thread wherein members shared what they are doing for detoxing:

www.healingwell.com/community/default.aspx?f=30&m=3602759

Hope you feel better soon!

Welcome back JDB. So sorry you are still ill but this dang disease is not an easy one, as you are finding out.

I don't recommend stopping treatment to see where you stand at all. I feel that just gives the bugs a chance to reorganize and become more powerful. I think maybe pulling back a little is okay, but not stopping unless you are becoming seriously ill from the meds.

I also think taking supplements is really important. Lots of nutrients are lost being sick.

And then there is detoxing. An accumulation of toxins can be so hazardous. Detoxing is easy and can be done daily with many items. Apple cider vinegar, lemon water, dry brushing, etc.

Just remember that there is no specific course that lyme disease follows. It has no rhyme or reason to it or its symptoms. One day you feel euphoric because you are symptom free and you have the world by a string. The next you are in bed and you feel like poop.

Anxiety runs high, depression, stomach problems, unexplained aches and pains...... normal, normal, normal. I don't think there is very much abnormal about lyme disease.

For me, it taught me patience to the nth degree.

Thanks guys.

I guess what's concerning me a little is that I dont have any specific things that people complain of on here. I dont really have joint pain anymore, although I did have very bad axial arthropathy for weeks. I had shooting pains and tingling that is gone.

All I am left with is the feeling of feeling like absolute crap. Sweats (not drenching just get very hot and tiny beads), clammy, weak, flu-like malaise. Did you guys have this as part and parcel? Like aside from the specific symptoms, did you have this overall feeling like you just had a bad virus?

try 60000 iu vitamin d it definetly work

I was going to say the same as JDB15 - I wouldn't do 60,000 iu.

Did any of you guys second guess your diagnoses at any point? I just worry that being seen by a lyme MD means everything gets attributed to lyme and potentially something else could be missed...months and months of abx and worsening symptoms only to discover you have missed the boat...

The stress of that is also worsening things...

JDB sorry you are having troubles. I'm not sure of your full story but I see others have mentioned that you will need to treat all your co-infections. Our DS goes to a group that sort of assumes that if you have Lyme, you most likely have babesia and bart -plus DS has enough symptoms (drenching sweats, breathing issues etc) that it's been fairly obvious. They also do blood work to rule out obvious other possibilities plus look at infections that are more reliably tested like mycoplasma which DS also ended up having. Just make sure you are covering all the infections plus as you cycle through the medications there may be times when you feel great for a few months (DS does this over the summers) and then you start new treatment and you feel lousy again because it's hitting a new infection. I also think for DS the sun in summer (and much higher vit D) keeps some stuff at bay and thus he feels great.

Yeah I mean this has been going on for 7 months so I have had a pretty thorough workup for infectious, inflammatory and other causes.

I cant run and lift weights today. The last week has been awful. I am so unwell. Sweaty. Chills. Low grade fever. fatigued. I just feel sick as a dog.

As I said I saw a hematologic oncologist yesterday actually who assured me it isnt cancer. The course has been so up and down that I think I know that.

Im starting to wonder if I have babesia. My haptoglobin is literally 0 which means I could be hemolyzing my red cells. I sweat. Low grade fevers. Etc etc.

Im gonna go to quest tomorrow and send a babesia Ab test.

Herbs I tried in the vital plan seemed to work for a period of time but I went back on them for about a week and saw no difference. Just on tetracycline now.

Yeah I read some of that stuff. Ive been ill since May, amd all along I have sort of been pushing myself. I was a lot better in September. I thought this was all over. I was running. Lifting. I had some other stuff like aches and pains but the constitutional symptoms were much better. Something happened in the last month to really screw me up. I have no idea what but I feel dreadful all over again. And as I say my bloodwork looks slightly worse though nothing anyone seems to care about for some reason.

I am so discouraged. Im supposed to move to California on Monday for 5 months. And have no idea what to do because I am so darn sick again.

JDB15 said...
And as I say my bloodwork looks slightly worse though nothing anyone seems to care about for some reason.

How far out of range is your blood work?

JDB - what is the haptoglobin test for?

I've never had that one done before.

My WBC is below range.

I don't understand why you are only taking one antibiotic. I don't know much about antibiotics because I did not get along with those very well, but it was my understanding that at least 2 antibiotics were needed for lyme.

I definitely second guess my diagnosis many times. But, because I had a bull's eye rash, it was pretty futile. I knew I was sick and I also knew it was something I had never had before because the symptoms were so strange.

You are very lucky to be able to exercise as much as you are. I think I spent a couple of months just laying around. That was all I could muster.