When is a herx really a herx and when is a symptom part of the disease.

[martysfolks]

Hi, It has been a long time since I have posted.  Went from A/P to MP last September.  On A/P straight, symptoms just started disappearing and I felt no herx whatsoever.  At about 18 months, I was completely symptom free.  So, I figured I was in remission.  Read about MP and decided to try it.  Seems like my symptoms are coming back.  I am at the end cycle of Phase 2.  I have trouble getting out of a chair and walking away. I find I have to stand slowly and wait a few minutes before lifting a leg to walk.  I have developed diarrhea at least 2x's /week.  My chest fills up with fluid more and I can not walk as fast or as far w/o heavy breathing and heart palpitations.  This all started last February, shortly after starting on phase 2.  I am suppose to start on Phase three, but do not know if I'm in a continuous herx or just regressing from feeling great to feel like I'm aging fast.  Even my face started wrinkling fast.  My mom's doc said, I seem to have aged 10 yrs. within 4.  A year ago, I looked 10 yrs. younger.  What happened?  I read that Scleroderma people don't herx as much as R/A people.  Is that true and if so why?  Dolores–S/D, R/A, ? MCTD

[Maz]

[user=111]martysfolks[/user] wrote:

I read that Scleroderma people don't herx as much as R/A people.  Is that true and if so why? 

 

Dolores, so sorry to hear you're having such a hard time of it on MP. This link has a comment on why some sclero patients don't herx – I'll cut and paste the relevant quote for you, but this link should help to answer the herx vs flare question in general:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

“Unlike the RA flare, which can last for weeks or even months, the Herxheimer flare reaction is often of short duration. (Scleroderma patients who do not exhibit inflammatory components to their disease generally do not report a Herxheimer of clinical significance.)“

Kim was on MP and reverted back to AP and can probably answer your questions better than I, as I'm not very conversant with MP.

What do the patient advocates on MP say with regard to your return of symptoms? Did they have any suggestions for adjusting your protocol?

Hope you're able to resolve this setback soon, Dolores! Peace, Maz

[Lynne G.SD]

YEA DODO;
       Nice to see you back here.I laugh out loud when you say you have aged.Me too kiddo.When the SD  swelling and stretched skin left  I became a wrinkle mess ,kind of like a balloon that has been full of air for several days and then emptied.You know how that looks,kind of flacid.Now add gravity to that and we become quite un-pretty. hehehe.
    Last year I started taking very high doses of MSM and L-Lysine and am having dramatic results ,along with that I do 40/50 minutes a day of facial exercises and everyone is commenting that I look a decade younger than I am.
    In case you did not know,there are only a few things that can externally help the skin,so when you get a face cream it should have Vit  B,C ,Eand .Hyluronic acid.External application of collagen is just a waste of money.We have a great magazine calle Protegez Vous that is a consumer protection magazine.They have done tremendous research over the last 7-8 years on skin products and advise us to use Olay ,Marcelle or Neutrogena products that are rather inexpensive.The Big named cosmetics with the big prices really  are a total waste of money.

[lynnie_sydney]

Hi Dolores – I am so sorry that your return to this Board is because you are having such a hard time. Maz has given you a good resource to check out re lack of herxing in SD patients. This is repeated in the Physician's Packet – Historical Protocol section: https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184

Scleroderma patients who participated in the clinical trials with minocycline were started on a twice daily, 100 mg dose.  That dose can be adjusted if necessary, and the patient may eventually reach the clinical trial dosage.  Scleroderma patients who do not have an overlap of inflammatory rheumatic disease generally do not report a Jarisch Herxheimer reaction of clinical significance. Other supporting therapies may be continued if not contraindicated.

In neither case does it explain why – simply notes that lack of joint inflammation in SD patients tends to result in no herx of clinical significance. I also agree with Maz that it would be great if you could correspond with Kim, who has experience of both protocols. Best to you. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[martysfolks]

Hi Lynne,  John got me back in.  Everyone seems to think that I am having a hard time.  Not so.  I just wanted to clear up the question (Is it a herx or a symptom)  I can't tell the difference.  I've been saying it all along.  In phase 1, I kept swallowing the extra Benicar for the irregular beats. That finally went away.  So, I considered that a herx.  But the diarrhea has been with me since February.  On & off 2-3 times a week.  Lasts a day and then I'm good for a few days and just when I think it's gone, it's back.  So, is that a symptom or a herx?  The hips get stiff if I sit in a chair too long.  Never had that before. Started last summer.  Is that a herx or a symptom?  My stomach gets swollen and sore post meals.  I have a hiatal hernia and feel like I swallowed a basketball.  It is still there 5 hours later. Very uncomfortable.  Is that a herx or a symptom? I can handle it all, but wish I didn't have too.  I take the Benicar, but I don't see a difference.  So, it must be a symptom because if it were IP (herx) the Benicar would take care of it. Now all my S/D classic symptoms that I had when first diagnosed like Raynauds, tightened skin on my chest, calcinosis, rapid weight loss and muscle pain & weakness so bad I couldn't turn over or open a door is gone and that awful itchy rash on the back of my knees went away.  Everything I am getting now is different.  So, I am confused as to what to call it. I'm hoping to get rid of it all and be able to fly like I used to.  Even when I went to P.R. two years ago, before MP and after A/P only, I was mountain climbing, Kayaking, snorkeling, swimming, hiking, etc.  Mike and I explored the entire Island and even the off shore Islands.  Now, I don't get out of my pajamas unless I'm going somewhere.  Could this be depression because of me being tied down with my 94 yr. old mom who has Alzheimers?  I've never been depressed in my life.  But,I really don't like it that I am tied down to the house everyday.  I just want to sleep away the day and spend the whole night on the computer.  At night is the only time I have some peace.  I hate to put her in a nursing home right now. She is not that bad yet with the Alzheimer's but she never lost her nastiness especially with Mike.  And I resent the fact that we have no privacy.  Mike and I can't talk to each other without her putting in her two cents.  My life is ruined because of this.  She moved in with us in Sept. and Mike and I never have time alone.  I am glad we hired the nanny and got away for New Years eve. I needed that time.  But, I can't afford a nanny all the time.  That gets expensive.  Thanks.  I may go to seek some counseling about this.  It can't go on forever.  I swear, she will live to be 115. You know, I'm the gypsy type who can't sit still and I love to travel about.  Well, now I feel like my feet are in cement.  Miss you Lynne.  Dodo to you always. but to the rest, I am Dolores   

[martysfolks]

Hi Lynnie-Sydney.  How are you?  I remember you writing to me a few years ago.  When I went on MP, I stopped checking RBBB because I thought this site was not too cool with MP.  Then I got so busy figuring out when to take what  and what to do if?  I posted on the MP board and been trying to follow it.  My big question, is it a herx or a symptom?  If you read what I sent to Lynne&santos.  (She is a good friend of mine), I explained a lot.  Contrary to what you thought of me having a hard time.  No, I can tolerate the annoyance of these new symptoms cropping up, but what confuses me is that all through A/P, I never herxed and even in phase 1 of MP, I never recognized any herxes as such.  But I have new symptoms cropping up and couldn't figure out if they were herxes or symptoms.  The whole thing is different from the symptoms of SD that I had when diagnosed.  A/P got rid of Raynaud's. calcinosis, severe muscle pain and the inability to turn a door knob.  Fingers were slightly stiff. Even TMJ disappeared.   It all went away and I became agile again.  Now, my hips hurt after sitting and can't start walking right away.  Diarrhea comes and goes 2-3 times a week. This started happening when I started phase 2 of MP.  So, is it a herx or a symptom that my disease is getting worse?  Or is it depression? My mom (94) moved in with us in Sept.  I've gone downhill and now don't bother getting out of my p.j.'s unless I have to go to the doctor or the store.  I'm tied down and I don't like it.  I sleep most of the day and am up most of the night.  It is the only time I have peace.  Also, my husband and I have lost our privacy.  We have to go out of the house to talk privately, because Mom sticks her two cents in and we can't have a conversation.  We've always traveled and lived in NY City where one can go outside anytime. Now I am tied to the kitchen and want to hire a cook.  Mom only eats rice, chicken and beans.  So, every night I have to cook two meals. I'm tired.  And I want my freedom back, but do not want to put mom in a nursing home just yet.  She still is not harmful to herself.  So, I feel like I'm between a rock and a hard place.  It could be a herx or it could be a symptom or it could be depression because my freedom has been taken away.  We moved to Florida for two reasons. I need to live in a warm climate.  My lungs get painful breathing in cold air and Mom was living independently in a senior facility.  Doc said she could no longer live alone, so we moved in together. Been here three months and I am not a happy camper.  That is why I am writing.  My body says change your living situation, my concience says take care of Mom.  What should I do? Confused in Fl.~~~~Dolores 

[martysfolks]

Hi Lynnie S.  I forgot to mention the reason for mom to live with us is because she has been diagnosed with early alzheimer's.  I understand that this can go on for 10 years.  She is 94, but longevity runs in the family. I'm going to go for counseling.  Dolores

[Jo]

You might want to check and see if any of these symptoms are from a possible Vit D deficency. 

Jo

[lynnie_sydney]

 A/P got rid of Raynaud's. calcinosis, severe muscle pain and the inability to turn a door knob.  Fingers were slightly stiff. Even TMJ disappeared.   It all went away and I became agile again.  Now, my hips hurt after sitting and can't start walking right away.  Diarrhea comes and goes 2-3 times a week. This started happening when I started phase 2 of MP.  So, is it a herx or a symptom that my disease is getting worse?  Or is it depression?

Dolores, I know this is a very big bone of contention. And it has many of us divided.  But serious Vit D deficiency has been indicated in much mental illness, including depression, irritable bowel symptoms (inc.diarrhea), muscle wastage and osteoporosis amongst other things. These effects certainly seem to correlate with what you are experiencing. So, whilst we cannot state a cause for the effect, perhaps at least there is a third option for you to consider: that this is neither a herx nor a return of symptoms of the original disease. 

On another note, I truly feel for you in being torn between your desire to take care of your mother and your desire to have some alone time in your marriage, particularly if there is antipathy from your mother towards your husband. It must be a very big strain on you. Counselling can sometimes help us work through these conflicting thoughts and emotions, so sounds like it's worth a try. Lynnie    

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Cheryl F]

Delores,

Welcome Back! You ask a very good question for your return post. A question that puzzles me almost daily as I read this bboard and go through AP with several family members.

My opinion, formed mainly from posts and coversations with John McDonald is that most of what you list that you are now experiencing is not a herx. From what John has said many times, is that the beauty of the MP for him was that his experiences and herxing followed the MP predictive model very well. That herxs were very dose predictable in the timing of the antibiotic(s). The herx symptoms may not be predictable as they change. From what you described it doesn't sound like your herxing is following a clear pattern that is dose time related. If you can find a pattern in the timing, then my guess would be that it is a herx. Also, the fact that the benicar is not acting as a pallative is another clue.

If Kim doesn't chime in soon, consider sending her a PM.

Because the mechanism of action is not known for certain (either for AP or MP), if AP doses were working for you, then that may be what you need to maintain your amazing remission.

Good luck,

Cheryl Ferguson

[Cheryl F]

Delores,

About your current depression symptoms:

As you said and I have seen from the tone of your posts over the past two years, you do not tend to be depressed. This tells me that this depression you are experiencing is not situational due to the life changes brought on by the need to care for your mother. Depression is a common symptom of rheumatic illness, don't dismiss this symptom because your situation gives you good cause to be depressed. Certainly the stress of the new situation may be affecting your overall health, that is another area that must be paid attention to, Take care of you too!

I watched a video last weekend of Dr. Brown, he talked a great deal about the symptoms of depression that most often accompany these illnesses. He stated that he was disturbed by the fact that most doctors do not recognize, respect and address this symptom.

Cheryl

[MJ]

Delores,

I was on MP for the second time for 1.5 years. The first time a few years back I was on MP for 6 months and became pregnant at 46:shock:. Prior to that I was on AP for about 4 years.

The reason I went on MP was that on AP I was having alot of coughing and tightness in my lungs. This scared me and I felt the disease might be progressing in my lungs. The addition of the benicar definitely helps me with the lung symptoms.

This last round of MP following my pregnancy was difficult the last few months. I now have a little toddler to take care of (who is my pride and joy btw) and I can't afford to lay in bed and on the couch all day. I could NOT get off the couch with the benicar q6. Also, the benicar wasn't that palliative for me the last 6 months. My kidneys always ached, my skin on the face tightens on and off t/o my day, pretty much the same symptoms on AP alone with the addition of horrible fatigue. The only symptom better was the breathing/coughing.

I decided to take an MP break and do nothing. That was not good-felt worse. So, I went back to AP and am a little better. Definitely not as fatigued as I was on MP. But, far from normal energy level. Still have the other symptoms, skin on face gets tight on and off, hair falling out, joints (knees ache), kidney pain.

If I was getting better or seeing visible signs of scleroderma reversing on AP alone, I would NOT have tried MP. My problem is my scleroderma is not very visible on my external. You wouldn't know I had it to look at me, though I don't look real healthy.

I also had a VERY hard time determining herx vs. disease progression. There was no clear cut herx following antibiotics, etc. There is not doubt that MP is helping many especially sarcies, but I'm not convinced that it's for scleroderma. I just dont' know. It makes a huge amount of sense to me, but when your skin is hardening and the calcinosis is coming back and your hair continues to fall out, along with all the other symptoms returning (except lung issues), coupled with EXTREME FATIGUE from the round the clock benicar (with a young child to care for), I just couldn't continue for now.

I've noticed that Joan Pass with scleroderma who began MP when I did no longer posts. I haven't seen her post in over 6 months, which to me is a bad sign. Kim stopped as well. And I don't think Elizabeth is doing great on it, though I don't know for sure.

I still am a believer in Mp and the science, just couldn't do it now.

Best, Martha

[Kim]

Hey Dolores, nice to hear from you again, but sad to hear things are not going well in your life right now. 🙁

Ah, the whole AP/MP debate?  The only program that is right is the one that works for you.  My brief history ~ started AP for SD and RA and did well ~ thought there was the possibility of Lyme and knew AP could only take it so far, so switched to MP to address that.  During the 6 months on MP, all of my SD symptoms returned with a vengeance…… total and extreme fatigue, extreme lightheadedness to where I was afraid of driving or just being found unconscience on the floor sometime, and the worst of all was the extreme neuro-herxing……I honestly felt like I was going insane.  Phase I was a piece of cake, Phase II – harder, and Phase III just too disturbing.  I pulled the plug, went back to straight AP, and now with a confirmed Lyme diagnosis, am on a rotating antibiotic Lyme protocol.  The transition from MP back to AP brought immediate relief, and was the right call for me.

You mentioned gut issues, which certainly could be just plain old stress, but could also be Celiac.  I just got results back last night that I tested positive for Celiac, and although I'm not surprised, I'm just plain mad. :doh:  Now, I have to use the few brain cells I have left to learn all about another odd-ball condition.  Trying to find a convenient doctor who knows beans about SD or Lyme is just not reality around here, nor are there any naturopath MDs in this area to help with the gut issues?  Healing my gut, could sure be the key to making all these treatments finally work, that is if I don't die first of BOREDOM!

In the past, I've so admired your spunk in dealing with adversity.  I'm sure that Dolores is still in there somewhere!

Sending you best wishes……..kim

[linda]

Hi Dolores,

I don't know anything about MP, just wanted lend my support. I completely understand about the aging, if I walked by someone I had not seen in 3-4 yrs, I doubt that they would recognize me. The good news is that it seemed to reverse a little in my last remission, but I too worry about the puffiness caused by my weight gain and the prednisone moon face. I'll probably have saggy skin around my chin, arms, etc, when I'm improved – but if I get better it's a small price to pay. Maybe we can start a “Saggy Skin” club! 😉 Thank goodness my friends and family love me no matter how I look, but it is still personally distressing. I'm with Cheryl on the depression being a symptom of the disease. I don't know if that helps you to deal with it, but there's something comforting in knowing that we don't have to blame ourselves; it's a symptom just like swelling or pain.

Laughing is always good for any illness, if you want a few giggles, try going to
Icanhascheezburgers.com. It's where I found my current avatar, and it's much cleaner than youtube. It's just pictures, but they're really fun (and yes, geeky, but that's me!:cool: ). Or rent your favorite comedy movie or show. Hang in there,

linda

[MJ]

Hi Kim,

Wow, I can't believe you were dx with celiac too!!! We had talked about that before and at that time, you didn't feel that you had celiac. Did you decide to go ahead with the test per the drs. recommendation or you just trying to solve the mystery?  Lynne said that she didn't improve much on AP until she dx as celiac+ and went gluten free. I believe she said that it took her over 6 months gluten free and then AP kicked in for her finally reversing her SD symptoms.

Now I'm wondering if I could be celiac+ and that is the missing link for me. I've never had a problem with my GI tract ever although the past few years I've become more constipated. Not horribly, but I eat alot of yogurt and take the psyllium husk and drink coffee to help. Who did you use for the test?

How is your sister doing since going on the AP?

Martha

 

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