Questioning my decisions… What to do now?

[tbird2340]

Good day all! It’s been a long while since I’ve visited the forum…

Of course, when I do visit it’s usually not for a good reason.. I’m feeling the worst I’ve ever felt and it has been lasting about 2 months. My feet hurt very bad when I wake up in the morning.. Both my wrists, elbows, hands, fingers, knees, all hurt!!

At this point I’m not sure what I should be doing.. I question whether I’m doing the right thing (going the alternative route) which I’m sure we all do when we are in a low point.. Dr S. (my LLMD), who I see every 3 months, said the Lyme must be alive and kickin now..

He re-added the Clarithromycin for that.. I’m not sure what labs I should be getting but every 3 months he orders different things.. I know my Anti-CCP is still through the roof (which is what scares me) but my other RA markers are rather low and or normal…

I would take OTC pain meds maybe once a week in the past.. But now I’ve been on Ibuprofen 800MG 2x daily for like 2 months!!

I do know my diet went out the window.. I also have been under a tremendous amount of stress the past 6 months (started a new job after 15 years at old job, almost took another job a few weeks ago, buying and selling our house, and 3 kids under 6 to boot)… I’m not sure if Candida is out of control or if that is just wishful thinking..

I just get depressed daily and think “This is my life from now on.. Severe pain every single day…” I think while walking to the store etc and passing people “I look like a completely healthy person but they have no idea how much pain I’m in..” My wife doesn’t even know.. I guess that’s how it is with most diseases..

Any advice from anyone? I can post bloodwork etc if it would help in any way..

Thanks so much..

Tom

Current Prescriptions
5/11 – Increased Minocin 100mg 4X Daily
5/12 – Restarted Clarithromycin 500MG (1)2X Daily
5/12 – Misoprostol 100MCG (1)2X Daily
4/12 – Ibuprofen 800MG – (1) 2X Daily

Current Supplements / Vitamins
Pure Encapsulations Buffered Ascorbic Acid
Designs For Health – Probiotic Synergy 120
Pure Encapsulations Vitamin D3 5000 IU
Amazon A-F (3) 2X Daily (for Candida)

Past Medications
8/10- 5/11 – Clarithromycin 500MG (1)2X Daily
2/11 – 5/11 – Hyaluronic Acid 6X Daily (Pure Encapsulations)
12/10 – Curcumin 500 with Bioperine 2X Daily (Pure Encapsulations)
12/10 – Olive Leaf Extract 500mg 2X Daily (Pure Encapsulations)
8/10-Famciclovir 500MG (1)3X Daily – Stopped 11/10
4/10 -Increased Minocin 100mg X2 Daily
Dx’d with Lyme 04/10

Dx’d with RA 08/2008
12/08 Started AP-Minocin 100mg X2 on M,W,F

[PhilC]

Hi Tom,
@tbird2340 wrote:

I do know my diet went out the window.. I also have been under a tremendous amount of stress the past 6 months

Tbose are both major factors. Either or both could be responsible.

@tbird2340 wrote:

Current Supplements / Vitamins
Pure Encapsulations Buffered Ascorbic Acid
Designs For Health – Probiotic Synergy 120
Pure Encapsulations Vitamin D3 5000 IU
Amazon A-F (3) 2X Daily (for Candida)

How log have you been taking those supplements, and how much ascorbic acid are you taking?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[richie]

Hi—400 mg of minocin daily is certain to evoke a king size herx !!!!!!!!!!!!!!!!!!!!!
richie

[tbird2340]

@PhilC wrote:

Hi Tom,
@tbird2340 wrote:

Current Supplements / Vitamins
Pure Encapsulations Buffered Ascorbic Acid
Designs For Health – Probiotic Synergy 120
Pure Encapsulations Vitamin D3 5000 IU
Amazon A-F (3) 2X Daily (for Candida)

How log have you been taking those supplements, and how much ascorbic acid are you taking?

Phil

Thank you for the reply Phil..

The ascorbic acid is:
480mg Vitamin C
93mg calcium
51mg magnesium
21mg potassium
20mg ascorbyl palmitate

I take it twice daily.. As far as the others.. I’ve been on the Amazon A-F for almost a year.. However, there was about 2 months that went by that I didn’t take it because I ran out and then weren’t selling it at the time.. I’ve always been taking Probiotics but there was also those same 2 months (recently too) that I ran out of Probiotics and didn’t reorder..

[tbird2340]

@richie wrote:

Hi—400 mg of minocin daily is certain to evoke a king size herx !!!!!!!!!!!!!!!!!!!!!
richie

But I’ve been on that dose for a super long time so I don’t think it would be all of a sudden, right?

[Krys]

Hi Tom,
We have the same doc! 😛
Dr. P. does not volunteer dietary and detox advice unless you ask. And then you have to ask more specific questions to get more specific advice! DO ask!!!
@tbird2340 wrote:

…I’m feeling the worst I’ve ever felt and it has been lasting about 2 months. My feet ..my wrists, elbows, hands, fingers, knees, all hurt!!
I question whether I’m doing the right thing (going the alternative route)

..on Ibuprofen 800MG 2x daily for like 2 months!!

…my diet went out the window…a tremendous amount of stress… I’m not sure if Candida is out of control…

Tom, I am very curious what alternative route have in mind?

Yea, diet and stress always do it for me. And then I always get depressed and think that nothing works for me and that I will be dying any time in the near future.
Then I remember that our brain and emotions are heavily influenced by bugs and their toxins and I stop listening to what “my” discouraged mind is telling me.

I pull myself out by doing very strict diet of chicken broth, chicken + veggies cooked and some raw. During that time no nightshades, no root vegetables (too much starch), no carbohydrates (not even rice, buckwheat, quinoa, etc.), no sugar, no milk, no yogurt, no eggs, no bananas (I am allergic to them), no nuts (when I flare due to big dietary indiscretion even nuts deepen the flare), limited fruit (no dried fruit).
I make sure I take digestive enzymes and/or Betaine&Pepsin to help digest whatever I am eating and to prevent any undigested food to create any further antibodies if they happened to leak through the gut wall.
I also start taking systemic enzymes as often as my hunger allows. Lately it is just Nattokinase.
If I don’t use systemic enzymes then I try to squeeze in some toxin binders (chlorella, psyllium husk, activated charcoal, marshmellow root, slippery elm, Chelated molybdenum,…). They have to be taken on an empty stomach, 2 hours after food and at least 30 minutes (better if another 2 hours) before any food/supplement intake. I have problems managing to take them more often than 2x day, but it still helps.
I add Bromelain and Papain to help digest any inflammatory compounds within the blood. Maybe it’s wrong, but I take them with my supplements.
I add anti-inflammatories and I use them in big amounts: Quercetin 3x 2-3 capsules, Curcumin 3x 2 capsules (when the inflammation is not VERY big, I use plain Turmeric 1-2 caps 2-3 x day), ginger 1-2 capsules 2-3 x a day. If the pain is big, I may even add Cayenne Pepper 1 cap 2x a day.

DETOX is a must. Especially during a flare and also when on a heavy duty abx protocol.
If you read Maz’ personal history and progress thread, she has listed all the detox measures that she uses and the list is quite fabulous!!!
If you are still hungry for more, betterhealthguy gives almost complete list of things that can be done: http://www.betterhealthguy.com/joomla/topics/detoxification
The only other detoxification help that I am aware of and sometimes use are detoxification hand mudras and and also massaging acupressure points for detoxification. And the use of mind imagery, especially invoking very soothing, relaxing and nurturing memories and images and basking within them as long as I can.

The supplements I listed earlier are only used during the flare and the amount gets that big when the flare is very big. On a regular basis, even with no flare, I use daily liver support Silymarin 1 cap 2-3 x day, NAC, ALA, CoQ10, Oxy C (for enhanced oxygenation) and like you, mega doses of vitamin C. If I get panicky due to a flare, I often increase Vit. C up to 12 g a day and no bowel tolerance has been reached yet (i.e. no diarrhea). It is very individual, though. My husband can tolerate 10 g while having a cold, but otherwise he gets a diarrhea after ingesting anything over 500mg! So I give him 250-500mg once in a long while: he obviously does not really need it.

If my energy allows (during a flare), I do green juices in the evening (additional detox): 1 head of Romaine lettuce + few sticks of celery + big cucumber + maybe anything else green if i can push myself to consider it.
If it is possible (time + other factors) I do coffee enema. If not possible, I do foot soaks. I gave some recipes over a year ago. But my favorite (great brain detox) is 1tsp of Cayenne Pepper + 1 TBSP of ground mustard seed added to warm water and soaking feet in it for 20 minutes. Epsom Salts + peroxide is good, too. My body loves it when I soak my feet in Borax dissolved in water.
There are herbal teas that help with detox. I have a big herbs supply at home (I make encapsulate most of the herbs myself) and I usually do not follow the recipes just grab a bit of nettles, dandelion, red clover (all good for detox) and may add some raspberry leaves, bitter orange peal (for enhancing digestion), etc.
Stephen Harrod Buhner in “Healing Lyme” (and what a fabulous book it is!!!) gives a recipe for “Arthritis Tea”:

This tea combination will help with inflammation and pain considerably and it tastes pretty nice.
Ingredients: One pound dried, cut and sifted (i.e. not whole or powdered) each of nettles, horsetail, dandelion leaf, peppermint leaf, celery seed, turmeric, devil’s claw, and meadowsweet.
Directions: Combine all ingredients and mix well. Add one cup of mixed herbs to 1/2 gallon of nearly boiling water and allow to steep covered overnight. Drink 3-4 cups daily.
Side effects: Will increase urine expression. Don’t drink right before bed.

His recommendation for arthritic symptoms and pain relief are:
“While many if not most arthritic symptoms will resolve with use of the core protocol, Stephania spp, teasel root, and vitamin A the following will help as antiinflammatories and for pain relief if something extra is needed.”
Curcumin/bromelain combination 400-500mg 3x daily
Devil’s Claw (specific for joint inflammation and pain): 1000-2000 mg, 3x day
Nettle: 1200 mg daily
Capsaicin cream (topically): 4x daily if needed
Arthritis tea daily.

Teasel root, Stephania tetrandra and vitamin A are Lyme-specific pain/arthritis intervention. The other recommendations are extra, if still needed.

There are lots and lots more that can be done but as you have little children and work full time, you would have to stretch the day into many more than 24 hours to incorporate anything else!

I hope that diet, detox and some helpful antiinflammatories will take care of the flare in no time at all!
When I do all of them I manage to pull through within 3-7 days! Then I stop most of the things I took during the flare and only take Silymarin, NAC, ALA, CoQ10, Vit.C, B complex + occasionally more supplements but not daily.

I’m not advising you to follow my particular method. I only wanted to show you that it really is possible to get out of a flare pretty fast! I never take any NSAIDs. The things I listed were always enough to stop the pain and inflammation.
I cannot take Buffered Vit.C. Always feel muscle and vein pain, chest and heart constriction. Plain ascorbic acid + magnesium + a bit of baking soda are fabulous for me! But maybe buffered C works very well for you!

Warm wishes, Krys

[Krys]

@tbird2340 wrote:

I’m not sure if Candida is out of control…

@tbird2340 wrote:

I’ve always been taking Probiotics but there was also those same 2 months (recently too) that I ran out of Probiotics and didn’t reorder..

It looks like Candida may be contributing!
Do you have any symptoms? Like uncontrollable sugar/carbohydrate cravings, insatiable hunger, some very dry and itchy eczema-like patches, coated /hairy tongue, etc.? Google Candida and you’ll see that the list goes on and on….
I hope it is not the case.
Taking care of the flare is easier than getting rid of Candida.

Keeping my fingers crossed it’s not Candida,
Krys

[tbird2340]

@Krys wrote:

Hi Tom,
We have the same doc! 😛
Dr. P. does not volunteer dietary and detox advice unless you ask. And then you have to ask more specific questions to get more specific advice! DO ask!!!

Krys, we have the same doc? You mention Dr. P. but I go to Dr. S.. ?

@Krys wrote:

Tom, I am very curious what alternative route have in mind?

What I meant by that is that I’m currently doing what I feel is the alternative route for my RA.. IE: ABX instead of the normal MTX etc..

@Krys wrote:

Yea, diet and stress always do it for me. And then I always get depressed and think that nothing works for me and that I will be dying any time in the near future.
Then I remember that our brain and emotions are heavily influenced by bugs and their toxins and I stop listening to what “my” discouraged mind is telling me.

I pull myself out by doing very strict diet of chicken broth, chicken + veggies cooked and some raw. During that time no nightshades, no root vegetables (too much starch), no carbohydrates (not even rice, buckwheat, quinoa, etc.), no sugar, no milk, no yogurt, no eggs, no bananas (I am allergic to them), no nuts (when I flare due to big dietary indiscretion even nuts deepen the flare), limited fruit (no dried fruit).

How long do you do this!? What do you eat for snacks??

@Krys wrote:

DETOX is a must. Especially during a flare and also when on a heavy duty abx protocol.
If you read Maz’ personal history and progress thread, she has listed all the detox measures that she uses and the list is quite fabulous!!!
If you are still hungry for more, betterhealthguy gives almost complete list of things that can be done: http://www.betterhealthguy.com/joomla/topics/detoxification
The only other detoxification help that I am aware of and sometimes use are detoxification hand mudras and and also massaging acupressure points for detoxification. And the use of mind imagery, especially invoking very soothing, relaxing and nurturing memories and images and basking within them as long as I can.

Yea, that’s one thing I don’t ever do is detox.. I just don’t know what methods to even try so I just don’t do any! Lazy and stupid, I know!!

@Krys wrote:

The supplements I listed earlier are only used during the flare and the amount gets that big when the flare is very big. On a regular basis, even with no flare, I use daily liver support Silymarin 1 cap 2-3 x day, NAC, ALA, CoQ10, Oxy C (for enhanced oxygenation) and like you, mega doses of vitamin C. If I get panicky due to a flare, I often increase Vit. C up to 12 g a day and no bowel tolerance has been reached yet (i.e. no diarrhea). It is very individual, though. My husband can tolerate 10 g while having a cold, but otherwise he gets a diarrhea after ingesting anything over 500mg! So I give him 250-500mg once in a long while: he obviously does not really need it.

If my energy allows (during a flare), I do green juices in the evening (additional detox): 1 head of Romaine lettuce + few sticks of celery + big cucumber + maybe anything else green if i can push myself to consider it.
If it is possible (time + other factors) I do coffee enema. If not possible, I do foot soaks. I gave some recipes over a year ago. But my favorite (great brain detox) is 1tsp of Cayenne Pepper + 1 TBSP of ground mustard seed added to warm water and soaking feet in it for 20 minutes. Epsom Salts + peroxide is good, too. My body loves it when I soak my feet in Borax dissolved in water.
There are herbal teas that help with detox. I have a big herbs supply at home (I make encapsulate most of the herbs myself) and I usually do not follow the recipes just grab a bit of nettles, dandelion, red clover (all good for detox) and may add some raspberry leaves, bitter orange peal (for enhancing digestion), etc.
Stephen Harrod Buhner in “Healing Lyme” (and what a fabulous book it is!!!) gives a recipe for “Arthritis Tea”:

This tea combination will help with inflammation and pain considerably and it tastes pretty nice.
Ingredients: One pound dried, cut and sifted (i.e. not whole or powdered) each of nettles, horsetail, dandelion leaf, peppermint leaf, celery seed, turmeric, devil’s claw, and meadowsweet.
Directions: Combine all ingredients and mix well. Add one cup of mixed herbs to 1/2 gallon of nearly boiling water and allow to steep covered overnight. Drink 3-4 cups daily.
Side effects: Will increase urine expression. Don’t drink right before bed.

His recommendation for arthritic symptoms and pain relief are:
“While many if not most arthritic symptoms will resolve with use of the core protocol, Stephania spp, teasel root, and vitamin A the following will help as antiinflammatories and for pain relief if something extra is needed.”
Curcumin/bromelain combination 400-500mg 3x daily
Devil’s Claw (specific for joint inflammation and pain): 1000-2000 mg, 3x day
Nettle: 1200 mg daily
Capsaicin cream (topically): 4x daily if needed
Arthritis tea daily.

Teasel root, Stephania tetrandra and vitamin A are Lyme-specific pain/arthritis intervention. The other recommendations are extra, if still needed.

There are lots and lots more that can be done but as you have little children and work full time, you would have to stretch the day into many more than 24 hours to incorporate anything else!

I hope that diet, detox and some helpful antiinflammatories will take care of the flare in no time at all!
When I do all of them I manage to pull through within 3-7 days! Then I stop most of the things I took during the flare and only take Silymarin, NAC, ALA, CoQ10, Vit.C, B complex + occasionally more supplements but not daily.

I’m not advising you to follow my particular method. I only wanted to show you that it really is possible to get out of a flare pretty fast! I never take any NSAIDs. The things I listed were always enough to stop the pain and inflammation.
I cannot take Buffered Vit.C. Always feel muscle and vein pain, chest and heart constriction. Plain ascorbic acid + magnesium + a bit of baking soda are fabulous for me! But maybe buffered C works very well for you!

Warm wishes, Krys

Wow! That is a lot to take in!! Thanks so much for the informative reply.. Also, I sent you a PM.. Did you receive it?

Thanks again!

[PhilC]

Hi Tom,
@tbird2340 wrote:

I do know my diet went out the window..

Could you elaborate on what you mean by that? Have you been eating things like pizza, potato chips, french fries, hot dogs, etc.?

@tbird2340 wrote:

Amazon A-F (3) 2X Daily (for Candida)

Why have you been taking that product? Is it something that your doctor recommended?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[tbird2340]

@PhilC wrote:

Hi Tom,
@tbird2340 wrote:

I do know my diet went out the window..

Could you elaborate on what you mean by that? Have you been eating things like pizza, potato chips, french fries, hot dogs, etc.?

It’s sort of a long story but here’s the gist.. Around the time I first got dx’d with RA I didn’t want to go the standard route.. I went to a naturalpath who did the machine thing where you hold the metal cylinder in your hand while he probes your knuckles (I think that’s what it was, I can’t remember).. Back then he told me he thought the root cause was Candida and said to go on a yeast free, sugar free, dairy free, gluten free diet.. So I basically ate tree bark for about 2-3 months (exagerating but you can imagine)..

I did this hard core, no cheating.. I lost like 10-30 lbs (can’t remember exacts) and I wasn’t overweight to begin with so I looked ill.. I felt fine (relatively speaking).. However, during that time of hard core diet I really didn’t feel any different painwise (that I can remember).. I mean, I obviously didn’t feel like I do now but I also didn’t feel like I do now before I started that hard core dieting..

So, I pretty much gave up on that and kinda went back to eating whatever I wanted.. Then I started to see an LLMD and he tested me for gluten sensitivity (stool test).. It came back like slightly over the max level.. The people who do the test say if you are 21 and the max is 20 it’s basically as bad as testing 500.. So, he told me to go gluten free..

Well, I did, off and on.. But in my head I just kept thinking “I already tried all this.. It didn’t make a difference”.. So now I go in spurts.. I’ll eat good for 5 days (gluten free, no candy, etc) and then on the weekend I’ll just say screw it.. Then I’ll go back to gluten free for awhile etc..

Thing is.. I can eat a ton of bread, pasta, etc and not feel any worse than I did the day before so that’s what makes me say what’s the point..
@PhilC wrote:

@tbird2340 wrote:

Amazon A-F (3) 2X Daily (for Candida)

Why have you been taking that product? Is it something that your doctor recommended?

Phil

My LLMD told me to take it for Candida.. I have really bad toenail fungus on one of my feet and after about a year taking that it was almost completely gone.. It wasn’t for that but I believe it does show it works as it took care of that.. Although when I ran out for those 2-3 months my fungus came back.

Thank you for the reply..

[Maz]

Hi Tom,

Sorry to hear you’re going through another rough patch….stress and diet certainly seem to be obvious culprits. Any chance Dr. Z might run some labwork just to rule out drug-induced lupus for you just to be on the safe side?

You’re on a really hefty dose of mino and this is unusual, even for Lymies. Usually, LLMDs prefer doxy or tetra in the higher doses as high doses of mino can cause other probs, like vestibular symptoms and hyperpigmentation. It’s also more likely (due to its superior tissue penetration) to cause hypersensitivity issues. Have you tried doing a wash-out period of a week or so? This is something Dr. Brown would do in these sorts of instances and, if there was a resolution of symptoms during this time, then it became obvious what was causing the flare in symptoms. A break of a week or two really doesn’t affect the long-term course of treatment, but can provide a much-needed break now and again for normal protein synthesis and to allow the body to rid itself of an over-abundance of circulating antigen.

Detoxing, as Krys has wisely suggested is of great import while on Lyme protocols…as a newbie, I was unaware of the importance of detoxifying and, although my labs were improving in my first year, my hypersensitivity continued to mount, so that it was almost impossible to tell if I was flaring or herxing…just felt toxic all over. LLMDs will employ long pulses with breaks now and again to build pressure on the bugs and then give the body (and bugs) a break, to scare the bugs out of hiding with a new round of pulsing. E.g. 2 or 3 weeks on abx and 1 week off. Done consistently, as I did it for several months in that first year, it can be pretty rough-going for rheumatics, but doing it now and again (with doc’s approval, of course) won’t harm overall treatment plan and actually helps the body to re-group and cleanse itself in-between hits.

Re: detoxing – the degree of detoxing needed at any one time is pretty commensurate with degree of herxing, flaring, hypersensitivity, and inflammation. The more inflam a person is suffering, the more attention needs to be placed on figuring out best ways to detox and how much is needed.

Here are some further things to check that are mentioned on the website…e.g. any change in generic, lately?:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

[tbird2340]

Thanks for the replies everyone.. I think I am going to take a break off the ABX for a week or two to see if there is any difference.. I’m also going to stay away from the gluten and no candy (and try to stay away from sugar all together)..

As far as detox goes.. What does everyone find is the easiest to do?

Also, I went back and was looking at my bloodwork and it looks like my skyrocketed Anti-CCP is coming down..

Anti-CCP (Normal < 5)
5/04/10 – 527.5
2/18/11 – 454.9
8/01/11 – 367.8
4/30/12 – 354

RF (Normal < 14)
5/04/10 – 34.4
2/18/11 – 41
8/01/11 – 45.5
4/30/12 – 36

My CRP has always been in the normal range and my Sed Rate has only been over the normal range by 2 once.. Other than that it’s been normal too.. Be curious what my bloodwork shows the next time around if I’m still feeling like this!

[Lynne G.SD]

Hi T bird;
I am so busy these days that I only get to the computer now and then.The minute I saw you have a gluten intolorance I knew I had to write a note.I have the same problem.I did pretty well as you did,be good and then cheat because I did not feel any better being gluten free.Did this for a couple years until my my doctor nearly gave me a kick in the —.This girl knows the score as she had Lyme,chronic fatigue,fibro and gluten intolorance and was just about bed bound for a couple of years.She told me that it takes up to 18 months off gluten to recover from the damage it causes.
I hate to tell you this but you will be eating cardboard again if you want to get better.
Your friend in misery,Lynne

[tbird2340]

@Lynne G./SD wrote:

Hi T bird;
I am so busy these days that I only get to the computer now and then.The minute I saw you have a gluten intolorance I knew I had to write a note.I have the same problem.I did pretty well as you did,be good and then cheat because I did not feel any better being gluten free.Did this for a couple years until my my doctor nearly gave me a kick in the —.This girl knows the score as she had Lyme,chronic fatigue,fibro and gluten intolorance and was just about bed bound for a couple of years.She told me that it takes up to 18 months off gluten to recover from the damage it causes.
I hate to tell you this but you will be eating cardboard again if you want to get better.
Your friend in misery,Lynne

Thank you for taking the time to post this. I appreciate it and it’s the swift kick in the a$$ that I need! 🙂

[Maz]

@tbird2340 wrote:

My CRP has always been in the normal range and my Sed Rate has only been over the normal range by 2 once.. Other than that it’s been normal too.. Be curious what my bloodwork shows the next time around if I’m still feeling like this!

Hi Tom,

According to my old LLMD who was pretty renowned in the Lymelands, there can be an almost “eerie lack of inflammation” in some Lyme cases. The pain can be tremendous, but there is no sign of inflammation whatsoever. Apart from a high anti-CCP, which is just an antibody test (LLMDs believe it’s a measure of infection activity), it’s not really a measure of inflammation, per say, in the conventional sense as are SED rate and CRP.

Tom, if Dr. Z. hasn’t checked you for DILE, would suggest that he do this, just for a routine check and to rule out this possibility. When I got DILE from mino, I had actually reached remission in labs, but the symptoms of DILE crept up over a period of months after this. I thought at the time that I may have an undetected coinfection surfacing, which can sometimes happen when layers of the onion are peeled back, but labs confirmed the DILE diagnosis. Are you also getting regular blood counts, metabolic panel, pancreatic and LFTs run?

[Author]

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