posted
I've been on antibiotics for about 6 weeks now. I feel alot of improvement, but I still have "wooziness in my head" (only when I walk which is weird), breathing issues (the need to take deep breaths, or yawn) and some tingling in my foot. How long does typical treatment last? I am anxious to get pregnant again but I think it's wise to wait until I'm done with the treatment. Any advice?
Also, I had a bad herx around 3.5 weeks into my treatment so I'm expecting another one soon. Do they lessen in severity each month or is pretty random?
-------------------- Lyme IgM: +31, +34, +41, 23-25 and 83-93 are Indeterminate.
Currently taking Oral Biaxin and Bicillin Injections. Posts: 47 | From New York | Registered: Jul 2010
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posted
I am curious as to the responses you will get.
When you say a bad herx what exactly did you experience?
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you being treated by an ILADS-educated LLMD? If so, it's really best to ask what the doctor thinks about your treatment protocol.
It depends on
How long you have been infected - and what kind of shape your liver and kidneys are in and what other infections you may have have. Have you been assessed for the full range of other tick-borne infections?
If you've just very recently been infected and you have no apparent coinfections, you are likely looking at at least four to six months or so with a few months beyond that of careful watching.
If you've been infected longer, treatment will likely take longer. One to three years, or so. It is different with each patient as the infection mix and level of damage varies greatly.
All along the way, liver support is essential to treatment success and adrenal support is also very helpful.
Even after you are much better, it is important to be monitored by a LLMD prior to and all during your pregnancy - as that will best ensure your baby's health (lyme can be passed on through pregnancy).
-------------- about that "wooziness in [your] head" (only when you walk which is weird) --
Not weird at all. Lyme can really clobber the inner ear. And lyme often causes fluctuations in blood pressure and blood volume. See if GINGER CAPSULES help.
Do this simple test with someone nearby: go stand by your bed, backed up to the bed so that you can fall backward onto it. Have someone "spotting" you for front and sideways.
Now, clear of sharp furniture, stand with your back very close to the bed but not touching it or anything or anyone. Feet slightly apart, in a good stance. Face forward. Now, close your eyes for 5-10 seconds. What happens? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A "herx" can come at any time. Often a change in medicine, overwork, too little sleep, liver stress, heat . . . and other stressors can contribute to a herx but it mostly is from the medicine's effect regarding how well your liver and kidneys can filter out the toxins.
Just because you had a herx 3.5 weeks into treatment does not mean the same pattern will repeat. Some do see monthly waves, as if the moon's pull is in rhythm with the spirochetes. Some don't. But, you can support your body more so according to the moon's cycle. I don't recall if that would be a new moon or a full moon, but you can explore all that.
Some see herxing every 3-5 weeks (as LymeToo recently mentioned in another current thread).
Liver support can help to minimize. It is important to try to minimize it as best you can and take extra good care of yourself.
Be aware though, as you add on other medicines in your prototol and rotate, the herx reaction can be a whole new ballgame.
What medicine(s) now? What's coming up next, if you know?
Are you also taking probiotics (away from the abx - antibiotics)? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
==========================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
posted
Thanks so much for the responses everyone! I'm being treated by an LLMD in NYC. I'm on 500mg of zithromax and 600mg of Omnicef. I'm also taking a bunch of probiotics (culterelle, coq10, florastor, russian gi, etc). I will also be seeing an herbal dr. who specializes in lyme next month.
I can only guess that I was infected in October 2009 (we had recently started hiking and that's when my first symptoms occured) but can't say for sure because I never saw the tick bite or rash. It took me 7 months to get the diagnosis though. My tests for co-infections came back negative but my LLMD suspects I have bartonella (b/c of symptoms I described, including stretch mark-like rash).
Keebler - I will definitely try that test to see what happens. And I'm glad to hear I'm not the only one with the "wooziness". It was really starting to freak me out. What do ppl typically take for liver support?
Good to know about the herx. I had a deep tissue massage a week or so ago and it felt good at the time, but I was a mess for the next 3 days (ridiculously sore, exhausted, dizzy, etc). I imagine that may have caused a herx.
-------------------- Lyme IgM: +31, +34, +41, 23-25 and 83-93 are Indeterminate.
Currently taking Oral Biaxin and Bicillin Injections. Posts: 47 | From New York | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you have had lyme for at least a year, and you also have babesiosis and bartonella, then you are usually looking at a minimum of 1 year of treatment. That is if all goes well and you have a great doctor.
Many treat for 2 to 2 1/2 years with a good doctor.
With a lousy doctor, you treat and treat until you get to a good doctor who knows how to get you well.
The need to take deep breaths or yawn is called "air hunger" and is a symptom of babesiosis, a lyme coinfection.
When you were tested by Igenex for lyme, were you also tested for ehrlichia, babesiosis, and bartonella? If so, what were your results?
If you stay on one combination of antibiotics, your herx should become less and less over time. However, whenever the doc changes your meds, you will likely get a strong herx to the new meds and then less and less as before.
Every time the doc goes after a new infection, same thing happens. You feel worse before you feel better. But, after the feeling worse, you are definitely going to feel better if the treatment is working.
If I were you, once I completed my lyme treatment, I would still wait at least a year before becoming pregnant. But, discuss it with your lyme doctor.
You want to be sure not to stress your body when you first complete lyme treatment. If you do, you could relapse. Pregnancy is a stress. So is winter, and many other things also.
So, give yourself time to build up your immune system and get strong again before taking on a pregnancy. It will be best for you and best for the baby.
Lyme has been known to cause miscarriages, and it can be passed to the fetus, so make sure you are rid of it before you conceive. That takes a little time--making sure.
It has been over 5 years now since I completed my lyme treatment and I am still symptom-free, enjoying my life. But, it took time and a good doctor to get me there.
Be patient. We say lyme treatment is a marathon, not a sprint.
You are doing great, and I am very happy for you!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Indeed, after a massage, can come a herx, (not technically but of sorts) more for the liver and kidneys to flush out. Be sure to drink LOTS of water for 24 hour after a massage. Massage is excellent, just be aware that it will cause an intensity of symptoms - and support your body more. Water is vital.
I wondered if on of the meds might be causing the "wooziness" which I'll just call vertigo now. Zithromax certainly can. (Minocycline and Biaxin seem to be two others).
But, as lyme can really destroy the ears, treatment is important and we all just do the best we can. If, at any point, your ears are too much affected by any certain med, be sure to tell your doctor so you can have a different medicine. There are options. Some do fine with zith, some don't. I hope you do so that you can be on your way to kicking this but -at TF says - it's a marathon, not a sprint.
Liver support is essential to help minimize effects on the ears for a couple reason, detailed in the thread below.
Milk Thistle is the most common liver support. NAC, too.
GINGER CAPSULES will be your new best friend to offset vertigo &/or nausea and help lower inflammation. Ginger tea is not strong enough but can help. You would want the therapeutic doses the capsules provide.
At first, though, not too late in the day until you see how you do with it. For some, it can be mildly stimulating and affect sleep. Others can take it in the evening and still sleep like a baby.
Specifically for LYME patients - lots of details about ears and what can help. I'd start 3/4 of the way down the page with the LIVER LINKS: ------------
posted
TF - thanks so much for the advice on the pregnancy front! I agree, it's definitely better to play it safe. All of my Igenex co-infection tests came back negative. I am seeing a great LLMD in NYC which ppl travel from all over the world for, so that's a relief. It took me 7 months (and a lot of conventional docs who told me I just needed xanax) to finally get there but now I feel I'm really on the right track.
Keebler - thanks for the tip about milk thistle! And I definitely need to increase my water intake!
-------------------- Lyme IgM: +31, +34, +41, 23-25 and 83-93 are Indeterminate.
Currently taking Oral Biaxin and Bicillin Injections. Posts: 47 | From New York | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lpass,
While it's nice that all (whatever "all" entailed) of your Igenex coinfection tests came back negative, it is important to still be somewhat cautious with that celebration. Even with Igenex, some of the other tick-borne infections tests just aren't able to be 100% on the mark with these sneaky infections that like to run and hide.
Your LLMD is likely your best guide for that. Experience counts way more than tests. Still, I hope you are lucky and deal only with lyme (that's enough). It's just not always crystal clear all the time.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler -- my LLMD suspects I do have Bartonella as well and said that the azithromycin should treat that. Not positive on the babesia, as the only symptom I have is the air hunger. I have another appt mid-Aug so we'll see if he may want to treat me for it then.
-------------------- Lyme IgM: +31, +34, +41, 23-25 and 83-93 are Indeterminate.
Currently taking Oral Biaxin and Bicillin Injections. Posts: 47 | From New York | Registered: Jul 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Listen to TF. Without the right super educated doctor, the road is endless. I'm traveling that path now. There are few 'good doctors' in the U.S.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I hear ya seekhelp, I've been to a bunch of them. I have very little faith in most doctors these days.
-------------------- Lyme IgM: +31, +34, +41, 23-25 and 83-93 are Indeterminate.
Currently taking Oral Biaxin and Bicillin Injections. Posts: 47 | From New York | Registered: Jul 2010
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Don't forget to treat parasites too. They do play a major role in this. I made huge stries in improvement with ivermectin and biltricide as well as anti-malarials for some unknown protazoal infection. Cold be babesia, could be something else.
Posts: 1104 | From N.California | Registered: Jan 2008
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