LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Herx vs side effects

 - UBBFriend: Email this page to someone!    
Author Topic: Herx vs side effects
Maia_Azure
LymeNet Contributor
Member # 44330

Icon 1 posted      Profile for Maia_Azure     Send New Private Message       Edit/Delete Post   Reply With Quote 
How do you tell the difference?

I've been on iv rocephin for about 5 weeks now, initial worsening of symptoms 3rd day with intense brain fog , but now it's smooth sailing.

Added IV Zithromax for the last two weeks, for lyme and babs. My fatigue has increased ten-fold, I get headaches after infusing sometimes ( starts back of head and radiates forward).

A few days ago I felt ill but no fever, now I have body aches and fatigue.

It just feels like my body is taking a beating from the drugs, but that's about it. I haven't really gotten off the couch in two days, but here I am middle of the night wide awake.

I went to my docs last week and the nurse told me most people feel initially sick and herx, then start feeling better.

I just feel like I'm on a steady decline. No real herx's to report. No obvious signs that I have lyme despite the three positive bands.

I'm a bit dejected as I wonder if this treatment was a $6,000 mistake. I'm pretty sure my picc line will come out by Christmas if nothing definitive will happen.

I think the next step is just lots of vitamins and rebuilding.

I'm just confused, I'm on a pretty aggressive protocol with rocephin, zith, mepron, and Byron white drops with a detox kit. I feel like something should be jumping out.

Meanwhile I feel worse right now, starting to get tummy issues, terrible fatigue. I don't think I can return to work after Christmas. If I don't return by mid-January I can lose my job.

I applied for long term disability but I'll probably get rejected.

I had goals, work, back to school, etc. now I'm just imagining a life living on my parents dime, who are too old for an adult child burning through their cash reserves.

This got longer than expected, but I'm just not finding a reason to get out of bed anymore.

On a positive note, I'm waiting on a babesia retest to see if 4 months of treatment knocked it down.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
It may not matter too much in trying to figure out the effects (which are not necessarily side-effects but just effects of how the medicine works / acts)

and a herx.

But it acts like a herx from the change in Rx.

Every time there is a change in Rx, combination, dose, method, a herx is very likely. And that may not happen right away. It has a lot to do with liver load.

I don't see any real liver support and it's important to be sure that is covered.

You mentioned a "detox" kit but that is not necessary the same as liver support and can sometimes be too strong. Language can be hard to gauge with names of things.

I'm not all the familiar with the product you take, though - just be sure it's not too much of a push and more basic nourishing of the liver such as explained here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
-

[ 11-27-2014, 04:40 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Five weeks is really way too soon, though, to expect a major turn around. Sorry. For some, with IV rocephin, they see a first major sign but it can take much longer for others.

You seem to question whether you have lyme or not, though, and that is very puzzling. Your symptoms, your test, it all very much confirms that.

Treatment is not a fast miracle. Not where lyme is concerned.

And, as you are taking mepron, looks like you also have babesia.

Sadly, whatever thoughts that even IV treatment would be a fast turn around to have to come around to the reality of it. Both lyme / babesia (and any / all tick borne infections) can be grueling.

Treatment can be grueling, too. Support is vital but that is also not a magic wand or "get out of symptoms free" card.

I will tell you that those who have processed assertively, with good LL doctors have a far better chance of seeing progress at some point in the future. But that can take many months, or longer. Still, even if you don't feel better, that does not mean you are not moving forward in important ways.

I know you want to feel better and have energy and brain power and all that. I know it's hard to drop the preconceived ideas / hopes of how this would go and a timeline.

Try to accept your body as it is, you as you are. Do the best you can and nurture yourself as required during this time as that is your job right now. And your right. Your right to be just how you are, drop expectations other than just doing your best, with wisdom, and hopefully some grace and humor.

We are not in control of everything. There are many unknowns here regarding time lines. I will say that there is no fast way to deal with this no matter what method is chosen.

Stay close to what you do know along the way: love.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Four months of treatment for babesia is a good start but it will likely need to be treated for while longer. No test can tell you that it's safe to stop at this early point in time.

It can become chronic so it's best to stay with it and not give it a chance to gain ground. You may be able to change your approach, though, to something easier to tolerate.

Buhner's books are very good with suggestions.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Zith can be hard to tolerate. Mentioned before but so very important to mention again, especially with zith: liver support is absolutely essential not just for the liver but also to help protect the ears.

Some of how you feel could be the ear / balance effects of zith. In addition to liver support, GINGER CAPSULES may help.

You say "headaches after infusing sometimes "

how fast are you doing that? If a push (20 minutes), try going to slower drip of 45 minutes to an hour.

Water? Drinking enough water? Do not clug water, ever, but drink about a glass an hour, a bit here, a bit there. Green Tea is nice, too.

Tell your LLMD about this, too, for their input.

you may need more MAGNESIUM, too. That's the first thing to consider for headaches.

POSTURE? assess that and muscle strain during the treatment. My guess is that some of that is going on, which can trigger that kind of headache.

Be sure your neck is always in good alignment and muscle tension is not increased at any time.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Maia_Azure
LymeNet Contributor
Member # 44330

Icon 1 posted      Profile for Maia_Azure     Send New Private Message       Edit/Delete Post   Reply With Quote 
Im doing the Soluna Detoxification & Drainage Kit, it has liver, kidney and lymphatic support.

I've also used the pekana detox kits as well as other herbal drops.

I'm taking vit d and a calcium/mag combo, and various fatty acids.

My iv meds come in home pumps, it's about 2.5 hours for the zith and 45 mins for the rocephin.

I'm just worried that if I'm not responding then the meds will be stopped. Everyone talks about herxing and I don't think I do.

It seems like everyone else does and I'm supposed to. If I don't ever, maybe I never had lyme.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
Maia_Azure
LymeNet Contributor
Member # 44330

Icon 1 posted      Profile for Maia_Azure     Send New Private Message       Edit/Delete Post   Reply With Quote 
I suppose it's had for me to understand what a herx is, vs feeling really crummy on my meds.

After I infuse, I feel weak, muscle pain.. Basically just like I put a toxic drug through my veins for the past 3 hours!

I've thought maybe I'm just one of those people that doesn't herx.

As for the lyme test, I just don't know how you differentiate between past infection and active infection when viewing the bands.

I'm probably going to be handing over 10,000 to my LLMD and pharmacy this year. I get nervous that it's a waste of my money like I'm being taken for a ride.

I it just upsets me how much LLMDs make off our lyme treatments. Even if I know they are also at risk by treating us.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post   Reply With Quote 
Please don't lump all LLMD's together with broad statements 'how much money they are making off us', which alludes to them being disingenuous.

The insurance companies, and pharmaceutical companies, are making billions.

I'm sorry you are not feeling well. I noticed in another thread you mentioned soon going off gluten and sugar. That could help a lot.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

Icon 1 posted      Profile for GretaM     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, sorry Maya but the statement about LL's really po's me.

Imagine how your doc must feel when you question you even have lyme?
Your doc is putting his/her family on the line to treat you, and you question your docs judgement?
Your doc must have strong character to continue treating you when you have that much doubt.

It's unfortunate that when ONE patient publically criticizes a LLMD on an internet forum, that ONE patient can jeopardize the lives of all the other patients that doc is treating, should an investigation be started by the medical board.

I thought you had a positive test?

If you don't think you have lyme, why don't you stop treatment.

It's that simple. Things are black and white.

But please, don't jeaopardize your doc and all your doc's patients while you come to terms with it.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
Brussels
Frequent Contributor (5K+ posts)
Member # 13480

Icon 1 posted      Profile for Brussels     Send New Private Message       Edit/Delete Post   Reply With Quote 
Maia, I don't know if you are open to energy tests, but if yes, I would just test what you need for detox, organ by organ: liver, lymph, kidney, small intestine, big intestine. Then take all substances after abx or killers.

I usually felt next to normal when I kept testing cleaning substances, so I knew that my awful feeling was a herx not a reaction to killers.

When you take the right substances (and these keep changing, either by the amount, or the actual substances you need) you go on living a normal life. You know then for sure how much damage a herx can do. Specially babesia herxes.

Posts: 6199 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
Maia_Azure
LymeNet Contributor
Member # 44330

Icon 1 posted      Profile for Maia_Azure     Send New Private Message       Edit/Delete Post   Reply With Quote 
Greta, I'm confused over what you mean by "publicly criticize an LLMD" considering I have not disclosed who any of my various doctors are, whether they be regular MDS, LLMDS, or my naturalpath doc.

I also don't remember criticizing any particular doctor. I do have a right to be angry that curing Lyme disease appears to be available only to the wealthy. While treating lyme patients can be risky, when you don't accept insurance it is lucrative, that's just a fact. And what is up with all those lyme websites behind paywalls?

I probably have enough money to last me until March if I'm lucky, when I finally max out my last credit card. I don't know what's going to happen to me then. I'm going through my angry phase obviously.

I don't think my doc is disingenuous. I believe this person fully believes in every part of the treatment, that doesn't mean every LLMD is good.

I believe my IgM is negative but my IgG HAS 3 bands. Added with the Bulls eye in 2005, it's clear I had lyme but not so clear its current.

My doc said if I have Lyme, it would be indicative that I would be herxing. Since I'm confused about herxing, it makes me think I'm not, which means by Christmas my picc will be pulled. My doc is treating on strong suspicion of lyme, it's not a tidy positive like some lucky people get! A lot of intuition and guesswork.

But on the plus side, perhaps I need to aggressively treat the babs before I can get at the lyme. My anxiety is through the roof right now, constant figiting and picking my nails and insomnia and severe fatigue. It's possible it's a herx, or the mepron is getting to me.

I think that was my main question... I just don't know what part of what I am feeling is from my meds or an actual herx. It seems so vague.

I feel like a lyme diagnosis comes with the stages of grief..denial, anger, bargaining, denial, anger, depression....somewhere in there must be acceptance!

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

Icon 1 posted      Profile for GretaM     Send New Private Message       Edit/Delete Post   Reply With Quote 
"I feel like a lyme diagnosis comes with the stages of grief..denial, anger, bargaining, denial, anger, depression....somewhere in there must be acceptance!"

Bang on right about that!

I wonder if we'll all have PTSD after treating these illnesses! I know I do already.

Sorry to hear about the insomnia and anxiety. Those are crummy symptoms to be battling while healing.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
Maia_Azure
LymeNet Contributor
Member # 44330

Icon 1 posted      Profile for Maia_Azure     Send New Private Message       Edit/Delete Post   Reply With Quote 
I do think my LLMD is one of the best, it's just when you are sick for over 15 years, it's hard to believe I found it.

I've done so many treatments that got me nowhere, perhaps with my anxiety my inner doubts are coming out.

And those inner doubts are the devil on my shoulder, telling me I'm wasting my money, this won't cure me, might as well give up. It could be the wrong diagnosis, etc.

I think I'm still traumatized from when my PCP yelled at me for 15 mins, then made me sit alone for another 15, only to come back in and accuse me of hysteria and substance abuse.

It's like when my boyfriend kicked me out of our apartment, accusing me of having 'a mental sickness.' I also don't think most of my friends take me seriously, they have no idea how I suffer. It's just me being melodramatic.

By the time I got to where I am now, I must have PTSD. Or complicated grief!

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post   Reply With Quote 
I understand. My daughter was born with congenital infections, and we went thru he!l trying to figure it out and get her relief from suffering. Years.

I went thru periods of the same anger you describe, and have depleted a retirement account I had worked hard for over my life-

releasing the anger along the way at different points, and having to dig in spiritually and get to acceptance, finding gratitude brings more peace, and therefore more healing.
Simple sayings: these the cards we've been dealt. Forcing the mind to have positive sayings, outlooks.

I also have learned where I can't put my energy- trying to explain or get validation from Dr.s or family members who offer nothing but negativity. I move on. Let go of the memories.

And yes, having the doubts is normal, too. At one point along my daughter's journey, I did give up- wanted to call it 'something else' I can't get to- but we did go back to treatment, and have gained even more improvements/ quality of life for her.

It is hard work regaining health from these chronic infections, often 2 steps forward, one step back. And requires change.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
Maia_Azure
LymeNet Contributor
Member # 44330

Icon 1 posted      Profile for Maia_Azure     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm in the middle of treatment, so I will probably look back at a lot of what I write and cringe. I have very low cognitive function ( can't read books anymore) and control of my thoughts.

I think this is intensifying due to my treatments. Originally I was interested in telling the difference between a herx or just toxic effects of the medication. You read any drug warning and they also have a myriad of side effects that do sometimes have commonality with herx effects.

I was worried over a lack of a herx as the Jemsek specialty clinic webpage says:

"Fortunately, however, the Herxheimer reaction appears to provide a highly reliable barometer of therapy in Bb, so much so that a treatment course which lacks the Herxheimer response places the diagnosis of persistent Bb in serious doubt."

It is written that the first herx occurs 3-5 days, and I did experience on then on ceftriaxone. I've had a worsening of symptoms going off 3 months doxy last winter.

I am on week 5 of treatment with added iv zith and my symptoms are debilitating fatigue, headache, pain all over body ( felt like I was getting flu but no fever) and heart palpitations one night ( perhaps from zith.) insomnia and increased anxiety.

I essentially hadn't gotten out of my pjs for 5 days now, just napping on the couch. Had that head in clouds brain fog feeling too. So maybe in this terrible state, some good news. A herx perhaps?

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just my opinion: I know that IV Azithromycin can target Bartonella, and what you wrote here:

'added zith symptoms now increased fatigue, headache, pain, insomnia, increased anxiety'

all sound like Bartonella to me.

What are you doing for detox? You must detox. Get sugar out of your diet, too. Gluten free 100% decreases inflammation and therefore pain for many.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

Icon 1 posted      Profile for GretaM     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm so sorry Maia! I totally understand where you are coming from with this causing PTSD.

The worst part is when the doubt of others not only damages the relationship but also damages us!

It is a lonely road at times. Well most of the time.

I wish I could get counseling for the trauma and anxiety about these infections, but in BC there aren't any LL counselors.

In debt, now single, poor days cycling with good days, and having an illness that is not understood by anyone who doesn't have it, is wearing me down.

I agree with surprise re: zith getting bart. And also babs if you are on mepron too?

You are brave and strong, and will find someone who will love you for just the way you are-lyme or no lyme.
[group hug]

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
Maia_Azure
LymeNet Contributor
Member # 44330

Icon 1 posted      Profile for Maia_Azure     Send New Private Message       Edit/Delete Post   Reply With Quote 
My LLMD suspects Bart, it's not confirmed yet. She initially thought bart, but the babesia duncanii test was positive.

Interesting to note, when I was young my grandmother had a feral cat give birth under her deck, and she would let me hold her kittens in exchange for food. One of the kittens scratched me right on the face while playing one day.

I have no recollection of illness, but I did grow up with frequent sore throats. So it's unknown, and I don't know if cat scratch fever is the same strain that ticks carry.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
Maia_Azure
LymeNet Contributor
Member # 44330

Icon 1 posted      Profile for Maia_Azure     Send New Private Message       Edit/Delete Post   Reply With Quote 
I was gluten free for 3 months doing an elimination diet. I added gluten back in and didn't notice anything different. I also read a bunch of studies on how non-celiac glyten sensitivity does not exist, so I'm conflicted about gluten.

My LLMD wants me to give up gluten and carbs/sugar...which is a bummer as food has been the only happy part if my life the past few months. I cut gluten out again, though I'm not necessarily convinced on that.

I'm all for cutting out breads and pastas, etc and other FODMAPS...I just don't know what to think about a total gluten elinination. Like, is that slice of pumpkin pie a good idea? Yes, yes it is.

I've gained 30lbs and my LLMD Said if I don't take the diet seriously it could hinder my recovery. I'm starving almost everyday right now. I've been spooning almond butter like crazy. Plus the mepron makes me vomit so I'm hungry from that too.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
Judie
Frequent Contributor (1K+ posts)
Member # 38323

Icon 1 posted      Profile for Judie     Send New Private Message       Edit/Delete Post   Reply With Quote 
"My doc said if I have Lyme, it would be indicative that I would be herxing."

I think that's not true for everyone. For me, I just got better and better on meds with the infection slowly being knocked back and less Lyme symptoms.

I got infected in 2012 and reinfected 2013. I had an EM rash both times and definitely active infections when I started treatment.

I was even on some cocktail of bicillin, doxycycline, tinidazole and some other stuff all at once and no herx.

My body overall did feel weaker over time on antibiotics though. Had to up probiotics and such to keep up.

I didn't have an earth-shattering change until I started malarone about 8 months into treatment. Instant energy. It was great.

What did me in was the levaquin and it wasn't a herx. It was an adverse drug reaction.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
Maia_Azure
LymeNet Contributor
Member # 44330

Icon 1 posted      Profile for Maia_Azure     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well this has been my roughest week. Never fell asleep last night, my feet were mixing cement all night long.

I just took my antihistamine for vertigo so I'm hoping that finally knocks me out.

My body is either fighting the good fight or the mepron is kicking my butt, or maybe both.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.