Herx or Doxy side effects?

[tainabell]

Hi all,

I'm only four days into my doxy treatment, but I can't say that its really going so well.  My arthritic pain hasn't really gotten much worse, still the same amount of swelling/pain, etc. BUT I have not been feeling well in so many other areas.  I'm getting a sort of waxing and waning nausea plus headache that comes on and off throughout the day and I am EXHAUSTED.  I also am having gas issues, a lot of burping and feeling of upset stomach, even some occasional stomach pain, like jabbing pain.  Not sure if this is related, but I have also been very very depressed, like don't even want to get up off the couch depressed.  I'm thinking this might just be the reality of getting diagnosed with something like Lyme, but not sure.

So my question is – is this herxing or is this side effects from the medication?  If I were herxing, wouldn't my ARTHRITIS be getting worse?  Why am I getting this sudden nausea and exhaustion?  I'm thrown up twice since Monday, and that seems like too many times for just four days.  Should I switch meds?

On the upside, my hives have seemingly miraculously cleared up!  Not gone, but really diminished.  The hives never really bothered me much though, they usually weren't itchy and I have had them for two years, so I was sort of used to them. This is another question – if hives is part of my condition, and I WERE herxing, wouldn't my hives be getting worse?

Despite the improvement in the hives, I'm feeling very weepy and sorry for myself right about now. :crying:  Being nauseated all the time is no fun.  Part of me wishes I had just left all this alone and not tried to treat anything.  At least then I wouldn't be in this murky mess of treatments and side effects and frustration!

Any help would be much appreciated.

Thanks,

Jen

 

[Maz]

Hi Jen,

Probably the best way to answer all your questions is to read Dr B's Lyme Treatment Guidelines:

http://www.ilads.org/burrascano_0905.html

It's pretty long, but should give you a good idea why it's so important to continue treatment for your Lyme in spite of all the nasty herxing.

It's so good you've found out about it now, because the longer one is sick with Lyme, the longer it takes to beat back all the symptoms…and, left untreated, your current symptoms would likely be multiplied and more entrenched as time wore on, making the clinical picture much more difficult to discern and treat.

Lyme and coinfections produces a confounding array of symptoms…nausea can very much be a symptom, as some people are affected gastrointestinally, sometimes with severe gastritis and abdominal pain. However, just to make things even more complex…a side-effect of doxycycline can sometimes be nausea, too. A way to test this may be to eat a light snack (crackers or apple sauce) when you take your doxy, just to coat the stomach a bit, and see if this helps. If it does help, it may be a side-effect of the medication. Quite often, the early nausea with doxy passes in a few weeks. If it doesn't improve with a snack or over time, then it may well be a herx reaction. A couple of the coinfections can cause pretty bad nausea, too. So, these may even require another type of antibiotic in combination with the doxy (see Dr B's treatment guidelines above).

Herxing can be varied and you may get worsening of existing symptoms or new ones. This is all pretty par for the course. Depression is a big one…this is from an increase in inflammatory cytokines and die-off – from the toxins released as pathogens are dying. Might not be a bad idea to start (if you haven't already) taking the lemon and olive oil detox drink, to help your liver dump these toxins faster. If you need the recipe let me know (or you can also do a search in the box above).

So glad to hear the hives are clearing up! Try not to let it get to you, though, if you continue to get little outbreaks now and again…the life cycle of the spirochete is quite long…I think about a month…so as it becomes more vulnerable to the antibiotics at different stages, you may find you get waves of die-off. This is normal.

I know how you feel, Jen, feeling weepy and down…this too shall pass and it's not you being weak or anything. It truly is the organisms and how they affect everything chemically in the body.

Sorry it took so long to make a reply. I haven't been able to get online as much as usual with my mum-in-law visiting from England and I've had a bit of a migraine these past couple of days. :doh: So I've only been doing short spurts online.

Hope you feel better soon, Jen. You're on your road back now and it may take some time and patience, but you'll get there.

Peace, Maz

[m.]

Jen writes, in her sig line:

“Doxycycline 100mg twice a day”

This jumped out at me when I read your post. Some people cannot tolerate this amount, right out of the gates, and you might not even need that much later, in order to make progress.

If you read the Historical Protocol at Roadback, you will see mentions of starting low.

I started out at 1 x 50 mg Doxy MWF, and then raised to 2 x 50 mg MWF.

Sorry, I don't know the details of your illness, but a key part of Brown's idea/strategy was more is not better. The approach is very different from treating an acute infection.

What does your MD say?

[tainabell]

Thanks for your responses….I really am feeling a lot better today, at least emotionally.  What a difference a day makes, huh?

Maz – thanks so much.  I printed out Dr. Burrascano's guidelines and ready with my highlighter in hand to get into it.  I'm also about three quarters of the way through Cure Unknown, so Dr. Burrascano's name is familiar to me after reading about him in the book.  These Lyme doctors are very courageous. 

m., I think the reason why my doctor put me on the high doses of doxy so early is because she was treating me for Lyme, not for arthritis.  She is supposed to call me today, so I'm definitely going to mention all the nausea and yucky side effects I've had so far. 

Do you belong to a Lyme support board as well, Maz?  I'm interested in some of the specifics of the stuff I've read in Cure Unknown and would love to ask some more pointed questions to Lyme positive people…I was hoping you could recommend a good one.  Thanks!

[Trudi]

I've had a bit of a migraine these past couple of days.

Hi Maz–

Bummer!! Hope you are feeling better today.  My aunt suffers from debilitating migraines; throws up, needs to be in a darkened room while suffering through it, etc.  We have decided, given the choice, joint pain is preferable. 🙂

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?

[Maz]

[user=854]tainabell[/user] wrote:

Do you belong to a Lyme support board as well, Maz?  I'm interested in some of the specifics of the stuff I've read in Cure Unknown and would love to ask some more pointed questions to Lyme positive people…I was hoping you could recommend a good one.  Thanks!

Hi Jen,

When I first got Lyme, I searched on yahoogroups for a support group. They have quite a few and many go “by state” that you can sift through. The good part about joining one in your state is that you can talk with others who know the Lyme docs in your locality and can share their experiences of them. Like any support board, though, you'll get a mix of folk….some preferring naturopathic treatments, integrative or holistic treatments or allopathic treatments. It's really up to you to decide what fits you best after doing the research and go from there.

Here is a link to the New York Lyme groups on yahoogroups:

http://groups.yahoo.com/search?query=Lyme+Disease+New+York

The Empire State Lyme group is run by a lady called, Eva Haughie, who is very well-versed in all things Lyme. Some of these groups are more political in nature than run as support groups, so you might need to check that out before subscribing, too. Each group has a little write-up you can read before joining.

There are others you can find online, too, but I preferred initially to talk with people in my state so I could get a good, firsthand physician recommendation. I stuck with this group (CTLyme run by Phyllis Mervine…also mentioned in Cure Unknown), because I've learned a great deal from all the articles that have been posted and they're really up-to-the-minute about recent Lyme research. Phyllis set up yahoogroups for every state, so you should be able to find this one for NY at yahoogroups, too. She sends out research and news to all the groups across the US.

All the best in your searches!

Peace, Maz

 

[Maz]

[user=442]Trudi[/user] wrote:

Bummer!! Hope you are feeling better today.  My aunt suffers from debilitating migraines; throws up, needs to be in a darkened room while suffering through it, etc.  We have decided, given the choice, joint pain is preferable. 🙂

Hi Trudi,

Thanks for your thoughts…funny you should mention whether I'd prefer joint pain over migraines…my hubby asked the very same thing this morning! I said definitely migraines! Who'd want RA? LOL

I don't always get the nausea, but do get the half-headed variety which throb and feel like a little man is behind my eye and taking an ax to my optic nerve. They usually last 3 to 5 days….really is a bummer. This one is still hanging on, so I better get off here soon and give my eyes a break.

How about you? Are you doing any better Trudi?

Peace, Maz

[Trudi]

How about you? Are you doing any better Trudi?

Hi Maz–

Good question!  I have more stamina and “desire” to do things as is manifested with some early “spring” cleaning; it's really more of a go through and toss from china cabinet, entertainment center, file cabinets, etc.  Whereever I can sit.  My knees seem to be getting better, but still don't trust myself to go out and shop.  My husband is going to be out of town next week (deer gun season) and I will have to rely on neighbors or kids if I need something–or maybe miracles will happen and my knees will get much better!! :roll-laugh:

My right hand has been giving me that feeling after you hit your funny bone.  Just started a couple of days ago.  Wonder if it could be due to too much of one of the supplements, of which I am taking large doses.  Who knows, always something!!

Happy Thanksgiving to you and all on the board–

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?

[Maz]

Thanks, Trudi…and hope you have a lovely Thanksgiving, too. 😀 Will it be deer meat for your table this year? I know you “country” folk like your deer meat, but just knowing that deer harbor Lyme makes me nauseous! :sick: I know, I'm just a dweebie town girl. :roll-laugh:

This might cheer you up. Cheryl shared with me that at the SF Lyme conference one Lyme doc spoke about Lyme arthritis in the knees and he confirmed that they are having very good success with clearing this up. That made my day to hear that, as like you my knees have been the most persistent. In fact, just this past couple of months I've been making 'good strides' in that direction (pun intended!). Swelling and pain is greatly reduced. It's taken 2 years, but I'm getting there!

It's good you're doing your spring cleaning while in a good frame of mind. I wouldn't want to be in the firing line of all that tossing out if you weren't! :roll-laugh:

Peace, Maz

[Lizz]

Maz – the other good news beside the knees is that your migraines will end with menopause. That's what happened to be after 25 years of distorted vision, nausea, and the stabbing pain behind my eyes for days! Keep the faith!

_____________________

Lizz R/A 11/07, AP 5/07

[Trudi]

Hi Maz–

My Thanksgiving will be at my sister's and we are having turkey!  My eldest, who is due at the end of Dec, and her husband will also be at my sister's.  The rest of the family is having turkey up north.  When it comes to eating deer, I'm more worried about Chronic Wasting Disease than ticks–neither appealing. 

The knees started to bother me in January of this year.  Seeing improvement is making me hopeful–the healing process is slow, but sure!

Lizz is correct.  My migraines vanished with menopause–hope I never have to endure another one!!

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?

[Maz]

Lizz – Trudi….thanks so much for this good news about migraines clearing up after menopause….roll on menopause! They absolutely do relate to hormone shifts as they come same time every month. Ugh. Lizz….you had them for 25 years??? You poor thing. Mine started in my late 30s…so about 10 years now. Hopefully that means I only have 4 or 5 years to go. They're incredibly debilitating.

Tiff…chronic wasting disease from eating deer? What the heck is that? Another type of chronic infection? :sick:

Okay…must get off here now…keep saying that, but wanted to hit some PMs, too.

Peace, Maz

[Trudi]

Hi Maz–

Here is some info on chronic wasting disease–

http://www.cwd-info.org/index.php/fuseaction/about.main

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?

[Parisa]

Tania,

A good place to research for information is http://www.lymenet.org.  It has alot of members so there's a lot of information.  Emotions tend to run high there sometimes so I try to use it for info and steer clear of the intense debates.

[Maz]

Trudi, thanks for the article on the deer wasting syndrome and filling me in. Who'd have thought? Now I'm really never, ever going to try deer meat! :roll-laugh:  I'm enough of a mad cow already and don't need any help from any more pathogens. Ugh.

Peace, Maz

[Author]

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