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Question about the meaning of "symptoms"

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Posted 11/30/2016 9:51 PM (GMT 0)
So I was definitely diagnosed with Lyme and we caught it and treated quickly. I never felt terrible except for a 3 day herx from ramping up Japanese Knotweed too quickly. My symptoms have always been mild but only slightly bothersome and I've been able to function. One symptom that was there in the beginning and persisted long into antibiotics was achy arthritic fingers. I actually got a really bad stomach bug where I was vomited nonstop for 24 hours and I noticed that the arthritic fingers really improved dramatically after that. I think it was a very violent and unintended detox. I also started taking supplements like INFLA-MED more regularly and the achy fingers/joints were nearly gone (may a pang here and there every few days). Well, we ran out of the INFLA-MED and suddenly I felt an uptick in the achy fingers and joints. Nothing terrible and still better than before. But I'm wondering if the INFLA-MED was somehow masking the symptom.

Also, I can't tell if things like arthritis mean the lyme or whatever coinfection are still there or if it's some type of residual damage or inflammation from the lyme.

If it is a symptom that the bacteria is still there, then do we really want to mask the symptoms? I mean, how will I ever know if it's gone?
Posted 12/1/2016 1:22 AM (GMT 0)
Are you taking the Japanese Knotweed at all since your large herx?

Did you notice that the JK helped your arthritic finger pain?

I'm not familar with INFLA-MED, but can attest to the fact that the JK tincture I am taking (still in relatively low dose) has cut my inflammation pains down considerably. WHich, I believe, it's meant to do.

If you aren't sure if you're healing or covering (like I was doing with pain pills), start lower on the JK and see what happens.

I also suggest adding in some collagen support, if you haven't already.
Posted 12/1/2016 1:42 AM (GMT 0)
lymebug - how soon was it caught...and how long were you treated with antibiotics?

Finally, you stopped while you still had the arthritic fingers symptoms?
Posted 12/1/2016 1:47 AM (GMT 0)
great question. without the support, sounds like the inflammation flares. Have you asked your Dr. if he/she thinks the pain is something OTHER than lyme? My GP ruled out rheumatoid arthritis because of my inflammation markers. Have you had any scans done of the joints in question? I think, going off the support is a good indication that something is up if you have a pain flare, and you need more treatment. I'm not a Dr...but this makes sense to me. This never really goes away from what I've read. One goes in remission and is symptom free, but I think it isn't likely to get every single spirochete out of one's system. Especially if one's protocol hasn't included targeting bio-films and cysts. If one is treated with anti-biotics, the critters, well, they know how to adapt and hide. You may kill some, but some may be smart and hide out.
Posted 12/1/2016 6:11 PM (GMT 0)

julymorning said...
Are you taking the Japanese Knotweed at all since your large herx?

Did you notice that the JK helped your arthritic finger pain?

I'm not familar with INFLA-MED, but can attest to the fact that the JK tincture I am taking (still in relatively low dose) has cut my inflammation pains down considerably. WHich, I believe, it's meant to do.

If you aren't sure if you're healing or covering (like I was doing with pain pills), start lower on the JK and see what happens.

I also suggest adding in some collagen support, if you haven't already.

I have slowly worked JK back in but I'm not taking more than 2-3 capsules a day. I'm not really seeing that it helps the arthritis though. It seems the arthritis got worse when I ran out Infla-med which contains the following:
Zinc (as Zinc Methionate) 10 mg
Selenium (50% as Sodium Selenite and 50% as Selenomethionine) 40 µg
Copper (as Copper Sebacate) 1 mg
Molybdenum (as Sodium Molybdate) 300 µg
MSM (Methylsulfonylmethane) 500 mg
Indian Frankincense Gum (Boswellia serrata) Extract (standardized to 70% Boswellic Acid) 200 mg
Turmeric (Root) Extract (95% Curcumin) 400 mg
Bromelain (3600 MCU/g) 400 mg
Ginger (Root) Extract (5% Gingerol) 40 mg
White Willow (Salix alba) (Bark) Extract (standardized to 15% Salicin)

Sorry but when you say collagen support you mean what? I'm taking Vitamin C.
Posted 12/1/2016 6:19 PM (GMT 0)

multifacetedme said...
great question. without the support, sounds like the inflammation flares. Have you asked your Dr. if he/she thinks the pain is something OTHER than lyme? My GP ruled out rheumatoid arthritis because of my inflammation markers. Have you had any scans done of the joints in question? I think, going off the support is a good indication that something is up if you have a pain flare, and you need more treatment. I'm not a Dr...but this makes sense to me. This never really goes away from what I've read. One goes in remission and is symptom free, but I think it isn't likely to get every single spirochete out of one's system. Especially if one's protocol hasn't included targeting bio-films and cysts. If one is treated with anti-biotics, the critters, well, they know how to adapt and hide. You may kill some, but some may be smart and hide out.


Well, my current Dr is sort of baffled by the persistence of my symptoms because it was caught early and treated heavily. He did recently run some bloodwork which I believe from my own reading ruled out RA. No scans on my joints because i'm relatively early in this lyme game and the pain isn't terrible but it's just there and it wasn't before lyme. I've started the herbs while I wait to Dr. J in DC and I guess I'll ask them there.
Posted 12/1/2016 6:32 PM (GMT 0)

Girlie said...
lymebug - how soon was it caught...and how long were you treated with antibiotics?

Finally, you stopped while you still had the arthritic fingers symptoms?

We caught it within weeks (2-3) of the tick exposure. I did about 3 months of antibiotics. 3 weeks of doxy, 1 week of amox, 2 months of ceftin with azithromycin. My local LLMD stopped the antibiotics and tested me through Igenex for co-infection and put me on herbs in the meantime. I made an appointment with Dr. J clinic in DC because I'm not feeling confident in my LLMD seeing enough Lyme in our area. I've at times have suspected a Bartonella (maybe Babesia) co-infeciton and feel that's why I'm not getting better.

The arthritis was much improved (most days no finger pain) when I stopped the antibiotics but I was still taking the inflamed and since we ran out it's much more frequent (daily again)
Posted 12/1/2016 6:38 PM (GMT 0)
It could be that the treatment was stopped too soon.

Please let us know what Dr. J. says - You are in good hands.
Posted 12/1/2016 11:38 PM (GMT 0)
Lymebug,

Good to see you on. How are the kids?

I have the very same symptoms and have been pain free for the past two weeks with Stephania Root (substitute for JK) and Wobynzyme PS. I wonder the same thing if the herbs/supplements mask the arthritic feelings. I also wondered why I didn't heal quickly. I was on abx within twelve days of my bite. My LLMD thinks I had lyme prior and didn't know it - so it will take longer. Any chance you could have had dormant lyme, therefore more toxins with new bite?

You have been very worried with the kids having lyme (and rightfully so), stress does make our symptoms worse and they stick around longer. I still believe you will heal quickly!

Keep us posted.
Posted 12/2/2016 1:11 PM (GMT 0)
Lymebug - you kind of answered your own question. You said: "the pain isn't terrible but it's just there and it wasn't before lyme."

This means it's a symptom of Lyme. While you're right in that we don't want to mask symptoms when we are trying to determine if we need more treatment - but there's no sense at all in suffering even from achy fingers while you are IN treatment.
Posted 12/2/2016 4:52 PM (GMT 0)
Hi Huddie,

The kids are mostly okay, but they have a weird headache or cough here and here and it's impossible for me not to worry that it's Lyme & co. and they weren't adequately treated.

I definitely don't think I had Lyme prior. I did live in the NE for some time but always in cities and and I didn't have any symptoms prior to this. Same for kids (they never lived in NE).

Unfortunately, I think some of us have co-infections, namely Bart, that were not killed by the antibiotic regimen for Lyme and it's probably why we haven't fully healed. My husband has been complained of not only achy hands, ankle but foot pain. Sounds like Bart to me. Hoping Dr. J's will take care of that for us.



Huddie said...
Lymebug,

Good to see you on. How are the kids?

I have the very same symptoms and have been pain free for the past two weeks with Stephania Root (substitute for JK) and Wobynzyme PS. I wonder the same thing if the herbs/supplements mask the arthritic feelings. I also wondered why I didn't heal quickly. I was on abx within twelve days of my bite. My LLMD thinks I had lyme prior and didn't know it - so it will take longer. Any chance you could have had dormant lyme, therefore more toxins with new bite?

You have been very worried with the kids having lyme (and rightfully so), stress does make our symptoms worse and they stick around longer. I still believe you will heal quickly!

Keep us posted.

Posted 12/2/2016 5:33 PM (GMT 0)
Lymebug,

It's hard not to question what is from Bart. Please update us on what Dr. J. has to say.

I had achey feet for a few days. Not pain, just odd feeling and I thought Bart right away. Pain has gone away completely and LLMD said traveling pain can be Lyme and other cos. not automatically Bart. Of course he said to watch it and track symptoms and then we will treat accordingly.

Hopefully you will get answers that put your mind at ease.
Posted 12/2/2016 5:53 PM (GMT 0)
I would agree with your LLMD, Huddie. Lyme does cause 'traveling' pains all over the body. It can stick around for a bit, but will eventually move on to another part of the body, or even disappear for a bit, then come back. Bart comes in and makes itself at home instead!! smhair
Posted 12/2/2016 5:57 PM (GMT 0)
Trav,

This is GREAT to know. You know I bow down to you before the LLMD's!

Lymebug, hope Trav's latest wisdom helps put your mind at ease.

Please keep us updated.
Posted 12/2/2016 6:05 PM (GMT 0)
LOL! It's true that experience is the best teacher!
Posted 12/3/2016 5:15 AM (GMT 0)

lymebug said...


Also, I can't tell if things like arthritis mean the lyme or whatever coinfection are still there or if it's some type of residual damage or inflammation from the lyme.

If it is a symptom that the bacteria is still there, then do we really want to mask the symptoms? I mean, how will I ever know if it's gone?

Great question. I'm also pondering this myself. I feel the most well today than I ever had since getting lyme almost a year ago. I feel well, strong, and dare I say "healthy"?

However, for the very first time since getting lyme, there's a mild arthritic soreness in my right thumb knuckle that wont go away.

So as I tackle a couple of mild lingering lyme symptoms, I am also hypothesizing that it could be residual damage left behind by lyme.

I believe after "recovering" from lyme, there's a stage of "repairing" the damage lyme left behind. Like liver health, thyroid health, gut health, muscle loss or weight gain (depending upon the situation), nerve damage, etc.

I think sometimes it can be mistaken that lyme is still a consequential active infection during the recovery process but rather there's a phase of repairing damage and re-balancing our bodies that lyme ran through the wringer.
Posted 12/3/2016 5:05 PM (GMT 0)
Partly true, Decarte - but, to risk not treating long enough is a very real risk, so it's better to extend treatments a bit longer than necessary rather than risk a relapse early on and have to start all over again. This is why we have always said it's best to treat for 2 months past the resolution of all symptoms that weren't there before these infections were suspected. For someone like me, that's hard to determine because I didn't know what it felt like to NOT have these symptoms, but nearly every symptom was gone before I finished treatments. What was left was so very minor that it never once slowed me down, not even for a few minutes. That's my goal again too.
Posted 12/4/2016 4:22 AM (GMT 0)
Absolutely Traveler,

I meant when a person feels pretty much completely well, the vast majority of the time. Almost to the point when a couple of really mild symptoms seem to linger and maybe also some cosmetic damage as well doesn't match how one feels.

I'm in this stage where the way I feel doesn't match the way I look. I've been doing physical therapy everyday for the past month and really pleased with the results, building muscle mass and muscle strength. Going to address liver and thyroid health for the dark circles under eyes.

Other than that I feel pretty great and for a while now.

So to reiterate I meant only when one has reached that crossroads in the lyme journey when they feel really well again. That's when it could be about repairing damage more so than attacking lyme.

Kind of like when Buhner stresses organ support and health and it's not all about kill bugs, kill bugs, kill bugs. Because a lot of the symptoms that hang around could actually be the damage lyme has done to these organs.
Posted 12/4/2016 1:44 PM (GMT 0)
Definitely, it's not all about killing! And I do agree with you - just wanted to be sure that it was stressed that we are not talking about during treatment, but after you are 'back to normal'.
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