Herx = sign of poor treatment plan?

[Todd WI]

As I was “researching” samento I came across a thought I found interesting:
<<>> source: http://hansacenter.com/pdfs/LymeDiseaseQuickFacts.pdf

I guess I found it interesting because I've always struggled with accepting the “I feel worse, so it must be working” part of AP treatment.  

Thoughts?

Todd

[nspiker]

Todd,

I agree with the fact that you don't have to herx horribly, to recover.  He's big on every kind of detox possible and uses bio resonance testing to determine the best protocol for each individual. 

Dr. Jernigan also said, “Tick bites are not the only way to get lyme”.  I'd like to read more on that!

nancy

[Valsmum]

I visited with an osteopath yesterday, hoping to find someone that will help me with AP besides my rheumy. He told me he's only treated one woman for RA with 6-8weeks of Flagyl and she was improved so much she didn't need anymore abx. He did say she came back a couple years later and then he treated her for lyme with abx and once again she improved.He said she had swollen fingers and wrists so it wasn't someone that had an ache hear or there. 

When I asked him about a herx reaction he said in  the Marshall Protocol they give a medication called Benicar(i think?) and it is supposed to help with the herx reaction. Also I think Dr. Brown always lowered the dose(abx) to suit his patient. He witnessed his own protocol work and he tailored the medication  to each patient. I think it's hard to take it slow and if we took it slow we wouldn't have such a bad herx reaction. That's my opinion for now. I take minocylcine and poof the next day my knees are swollen, I'm only at 50mg twice a week.

Speaking of herx reaction, I'm trying the vitamin c flush today, I found it on CPNHELP.org and it is to help with the herx reaction.  Basically it kind of gets everything out of your system, including those nasty toxins. I hope it works.

 

[Valsmum]

I thought of one more thing. When I read through  Road Back.org I look for those in remission. I am going to take their advice before anyones elses. So if they went through similar symptoms as  mine and then they started antibitiocs and then had a herx reaction and then went into remission. Well then I am ok with herx reactions:) as long as it takes me to less pain and remission.  Take care!

[maz.aust]

I agree with Nancy & Val's mum …

However would gently remind you (not wishing to upset you) that if you have problems with the concept of 'must get worse to get better' think of those on chemotherapy drugs, the patient certainly gets really really sick whilst the meds are working, I know it's a big one but one of the best examples I can think of, there are lots of examples in medicine where that happens.   The concept is not a new one & often that is the case with patients on medication however in this case the herx reaction is real & can be seriously hard to handle which doesn't mean the meds are not working it is just how our bodies react to the meds & die off; underneath all the discomfort the meds are actually working.  I am with most everyone on this one, if you drop the dose you will feel a little better or a lot better depending on how you react to the abx .. there is no 'one size fits all' here .. it is trial & error both with the dose of meds, type of abx & how we react to the treatment.  Everyone is different.

My golden rule is that my Dr remembers she is trying to kill the bugs not me!

 

(ps : just as an aside, eg throughout my lifetime I have had to have flagyl from time to time & never reacted to that particular drug, however a few months back needed to use flagyl & boy did I herx, it was such a bad herx I never want to use flagyl again & yes this was the first time I have needed that particular med since dx — our bodies change.)

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[lynnie_sydney]

I'd be interested in reading more of this guy's rationale for this statement. I completely agree that a severe herxheimer response is counter-productive and ultimately not helpful to the patient (even sometimes life-threatening). https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html[/color]

But – given that I accept the infectious theory – I am not convinced that it can be completely avoided given that it is generally accepted that the herx is caused by cell die-off, particularly of spirochettes.  http://en.wikipedia.org/wiki/Herxheimer_reaction

However, that is the reason why AP and Lyme treatments must be tailored to the individual's needs and tolerance (sensitivity). IMHO, always best to find a Doc you can work with rather than who will simply dictate 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)

[Todd WI]

It?s been a while since I?ve looked at CPNhelp.org or the MP site, but I seem to recall both seemed to have a bit of a ?no pain ? no gain? mantra (although for CPN the pain is polymorphia not herx).   On RBF a herx is generally believed to be a good thing, or at least not a bad thing, if it?s not too severe.  

This doctor is treating Lyme, so I?m assuming he understands what a herx is.  His statement seems to go against the common knowledge and certainly has implications on tailoring a plan to fit a particular individual.  For example, do you aim for minor herxing, tolerable herxing, or absolutely no herxing.  If the end result is the same, the no herxing plan sounds pretty good.

I?d like to know more about his rationale for the statement too.  I guess I need to read his book.  Thanks to all who commented!
 Todd

[richie]

Hi–Not true –RA folks and lupus folks seem to herx while scleroderma folks dont tend to herx –I never herxed and totally recovered –Dr T up at Harvard absolutely does not buy into the herx idea –Incidentally –the author of your quopted article is a chiropractor —looks like he wanted to be a doctor !!!!!-
richie

[lynnie_sydney]

yes sorry that has been discussed before – it's the folks with inflammatory forms of rheumatoid disease that tend to herx – and I've yet to hear of anyone with Lyme who hasnt experienced it. 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)

[Rosemary Perth Aust.]

I herx with every single thing even vit. and minerals All the good things I need, Initially that is. Even if I put my hands in anything I have not used before. . Anyone who is chronic with MCTD will herx, except Scleroderma patients apparently. We all know that really severe herx's are dangerous that is how you know to reduce. I think many who have not had these inflammatory condition find it a little difficult to understand. It really is the state of inflammation in my body for sure. I am always pushing it also. Know it is part of the deal. Usually lasts about 48 hours then I get over it. I would have had a real problem if I had stopped everything that caused a herx.

[Joe RA]

Hi: All… I have to say I never herxed in the six years on AP but the pain I was in before I started AP, I will never forget. I was feeling better only weeks after starting AP and I Believe it was a number of things I did unknowingly to make this happen , #1 I stopped taking enbrel, mtx and shortly after prednesone cold turkey, none of them did me any good, (so why not). Then I cut out all sugars, refind wheat, processed foods and begain to eat healthy natural foods that has been known to benefit the body and not just hunger. while looking for a good Probiotic for me to take I came across articals on Raw Milk and that was the best thing to find next to AP therapy. It has become probiotic, my lunch and dinner drink and a big reason why I was and still am herx free and doing so well with my once very severe RA.  I can go on and on about the benefits of Real Raw Milk  You can read about it here  http://www.raw-milk-facts.com       JoeRA    

[lynnie_sydney]

[user=35]Joe RA[/user] wrote:

#1 I stopped taking enbrel, mtx and shortly after prednesone cold turkey, none of them did me any good, (so why not).

Joe – fantastic news about how well you are and what you have done to promote your wellbeing.  Way to go! :dude: Not sure how long you were taking pred for, however, and I'd just like to just hazard caution for others about the sudden stopping of pred when it has been taken for some time. It can be life threatening to stop suddenly. There is a great deal of information available about the reasons for the need to taper from it which can be googled. Here is an extract from one piece of info: Lynnie

Prolonged use of prednisone can cause adrenal glands to atrophy and stop producing cortisol. Patients are often told not to stop taking prednisone suddenly. The dose of prednisone must be tapered gradually to allow the adrenal glands, which have atrophied, time to recover. Otherwise, the patient could put themselves in jeopardy of entering into adrenal crisis (e.g., nausea, vomiting, shock). http://arthritis.about.com/od/prednisone/a/prednisonefacts.html

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)

[Joe RA]

Hi: ..Lynnie… I was only taking 5mg of prednesone at my request because I have known people taking as much as 30 to 60mgs who looked like walking sausage from that stuff, or should I say (Stuffing). Anyway I was told by the Dr. I did not have to worry about it . I took the pred. for 2 1/2 yrs. with the other traditional drugs that proved to be worthless to me But not to the people pushing them.

[Trudi]

[user=67]Todd WI[/user] wrote:

A Herxheimer reaction (herx) is a sign of a poor treatment plan and is unnecessary.

Hi Todd–

Boy, this sentence really got me thinking.  How do you control how much die-off you get to then control the horrible herx?  I got a very bad case of what we think was the flu on Sunday.  Aches and fever that I have never experienced.  I couldn't even stand.  I am thinking the fever caused some major bacterial die-off because when I started to feel better, my knees became hot and swollen to what I contributed to a major herx. 

Since your doctor trained under this doctor, I will be very curious to learn (and probably others on this board) how your herxes are being managed.

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Todd WI]

Hi Trudi,

For clarity sake, my doctor did NOT train under the individual  that made the statement.  Actually, I'm not doing anything special to manage herxes, although I suspect if they became unbearable my doc would back off on the treatment plan a bit.

Todd

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