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Posted 3/30/2013 8:05 PM (GMT 0)
I haven't been on here much as of late, just lying low and healing.

I have come to a crossroads in my treatment, where I have been on doxy for 3 months now. I have made some improvements, but I still have herxes.

I am increasingly finding the doxy to be intolerable. I feel so awful when I take it, it's slowing down my digestion, etc.

I am also taking an herbal teasel, red root, and licorice tincture that also brings on herxes from time to time.

Aside from that, I do saunas a couple times a week, and some light exercise (which can bring on a herx.)

I would like to transition off of the Abx, and just use the teasel tincture, monolaurin, saunas, and exercise to continue to treat the lyme.

Some say you NEED Abx, some say it's best not to take them. I just don't know. Is 3 months enough time on them?

My ND supports me going more natural and going off of them, while my LLMD is pushing for me to stay on doxy and start flagyl. I am very torn and confused.

I want to kick this, but not sure that pumping my body full of more Abx is the way to go.

Does anyone have experience with this? Advice?
Posted 3/30/2013 9:25 PM (GMT 0)
3 months is not enough time as I assume you have Late disseminated Lyme like the rest of us. Undertreating Lyme can make it worse so my opinion would be to stick with the doxy for a few more months and add the flagyl if that's what your Lyme doc feels you should do.

You'll probably be on another combo later depending on what co-infections your LLMD suspects you have if any. Don't give up. Patience is key to kicking this.

Posted 3/31/2013 10:44 AM (GMT 0)
ToddPaul,

Thank you for your feedback. I'm afraid you're probably right.

I think I've had Lyme for at least a couple years. I've been tested for coinfections, and nothing came up, and so far treatment seems to be progressing.

I'm scared to start Flagyl, honestly. He said it'll make me feel worse, and I just can't stomach that right now.

Thanks for your feedback.
Posted 3/31/2013 11:21 AM (GMT 0)
I'm at the same cross road.
Ive been treating for almost a year. Ive done IVs, doxy and herbs.
I have had a few times where I thought I felt better, but not right now, Ive been bad for a few weeks now.
thousands of dollars gone, cant go in the sun on doxy ( I live in Florida, its all sun )
I think when this bottle of doxy is gone, I'm done.....one way or another!
but on the other hand, I would recommend you treat longer. we suffer either way, just get lyme going the way you want it to...OUT!
Posted 3/31/2013 3:24 PM (GMT 0)
Tom,

I agree, trying to stay out of the sun is tricky and a pain. I live in Massachusetts, so this winter it hasn't really bothered me, but as we move toward the summer, it probably will.

Perhaps you have a coinfection, which could be behind your treatments not working.

I have noticed some improvement, I think, over the last few months, but it's so up and down, it gets hard to tell some times. Even when I track my symptoms, it is hard to tell.

Best of luck to you for healing.
Posted 3/31/2013 4:19 PM (GMT 0)
Thanks, bbrian.

I am taking a healthy dose of probiotics daily, as well as saccharomyces bollard (yeast). I'm also incorporating some fermented foods into my diet as well. However, the nausea was off the charts last week, which is unusual for me. Also, I have to take a magnesium supplement daily or else elimination is a problem. Not sure what to do though, at this point.
Posted 3/31/2013 4:53 PM (GMT 0)
Well, I can tell you that I tried to use pharma abx for a full year, and only got worse, deathly ill to be honest. Once I switched over to herbals only, I started healing and had massive improvements within 3 months time.

It's not a matter of how long you give the abx - it's a matter of what your body can work with to heal. If you are not finding significant improvements with pharma abx, then it's time to try something else.

Powered ginger root is all I take to control my nausea that used to be off the charts - as in I couldn't eat or drink anything unless I did it in very small sips and nibbles all day long. I take 1500 mgs three times a day, but it also helps with so many other things like pain, boosting circulation and thinning the blood (many have thickened blood from these infections).
Posted 3/31/2013 6:29 PM (GMT 0)
Traveler,

Thank you so much for your feedback. What do you think causes the nausea? Is it the Abx or the Lyme? I will look into the ginger root, that's a good idea. Good for many things.
Posted 3/31/2013 7:28 PM (GMT 0)
For me it was totally the lyme or coinfections that caused the nausea. Within 2 days of abx I was able to eat again. And when I went off for 6 weeks the nausea came roaring back. It is different for everyone though.
Posted 3/31/2013 10:34 PM (GMT 0)
My nausea was caused by the Lyme and what it did to my intestines. I deal with serious constipation and abdominal cramps, and used to have pseudo-blockages.

Although abx can certainly cause plenty of nausea! I haven't used pharma abx since 2007 though.
Posted 3/31/2013 11:33 PM (GMT 0)
Nausea is completely new for me, so not sure what it's about. I think may have been a herx, since it went along with some other herx-like symptoms.
Posted 4/1/2013 8:14 PM (GMT 0)
MissK, have you tried a different abx?? I found doxy to be a total nightmare. I've tolerated other hardcore abx pretty well, but I could not tolerate that. I've been on azithro, plaquenil, rifampin, amoxcillin and ceftin. All of which have been totally fine. Within one minute of taking doxy I would feel ill--literally. I don't *think* I had an allergy to it, I'm not sure. But if you can get on an abx that is more tolerable, you may feel like you can go a longer period.

I'm in the same boat as you. The naturopath told me to stay with the herbs, my LLMD pushed the abx. I took a break from abx from October-the very beginning of February and I have to say I felt alot better!! Whether or not I was killing anything, I'm not sure. I did herx a couple of times when I increased my abx, I do know that for sure. It's all such a guessing game. I plan on taking abx until mid-June and then I plan on going to Hansa in July which I'm praying will end my journey with abx. I'd rather stay on herbs literally for the rest of my life then to continue taking abx. I feel like I'm poisoning myself. I really do.

I'm in MA also, who do you see?
Posted 4/1/2013 8:53 PM (GMT 0)
ShabbyChic,

If you can email me, I'd love to talk doctors and such.

Jenn
Posted 4/2/2013 12:40 AM (GMT 0)
Hi MIssK..

I respect you for looking at all options!

I have never done abx..have been treated by docs who either do not use them (except herbal abx) or were willing to not do so.

I can say I am well on the way to being 100 percent and am very glad I chose not to.

I also know of others who have gotten well using natural methods AFTER doing, in some cases, years of abx and got much worse. I am not suggesting they are wrong. I am only stating that they do not seem to be necessary, even though some docs think so.

My current doc, Dr. J from Hansa, has never used them and has treated thousands of lyme patients. He has written extensively about his reasons for this, and the kinds of treatments he uses.

You can read about it online by googling Hansa Clinic or looking on facebook.

You can also order his book, Beating Lyme, which outlines a home protocol that people have used to get well.

good luck!!!
Nan
Posted 4/2/2013 12:52 AM (GMT 0)
Hi Nan
I am actually reading Dr. J's book right now. That is one of the main reasons I'm looking to stop antibiotics. I would like to restore my body to its intended integrity.

I am scared though, because I have made some improvement on the ABX. I am scared I could regress or have some of my old symptoms return.

I know that ABX are not the final answer, as I can't take them forever. I'm just confused about if they could be part of the answer for me.

Some people say that you have to have them, and I believe that is true for them. Each person responds so differently, it's hard to know.

Thank you for your thoughtful response.
Posted 4/2/2013 1:16 AM (GMT 0)
Hi Miss K,

I understand the fear!

One thought occured to me: if you did regress, you could always go back to abx. they are not going anywhere :)

It's not like if you try a treatment (and I do think you need to give treatments several months minimum) and do not think it is helpful, that you cannot go back or do something else.

Best to you, Hon.

oh...Perry Fields is a well-known athlete who recovered completely using alternative means after years of abx. she writes extensively about lyme and what she did.
Posted 4/2/2013 4:25 AM (GMT 0)
bbrian: I get why you would be wondering about Hansa! I will try to explain how it is different..sorry so long..but I think necessary to get the info out. I had similar concerns before going :)

Dr. J is a chiropractor. They go through practically the same school as GP MD's (I did not know this til recently..most chiros just bone-crunch/adjust...this is definetely not what happens at Hansa)

Dr. J works with other docs who prescribe bio-identical hormones for those who need them (I do).

He also works with a Neurologist (MD) for certain procedures. ( I went to him in Vegas)

Dr. J doesn't do normal chiropractic. He treats your whole body for the whole hour you are there. It is very comprehensive and dynamic. This is unique. ART is somewhat similar, but not as complete nor is it dynamic...see below... (my local doc uses ART....have experienced it for 3 years)

He does BioResonance Scanning..a type of advanced kineseology that can test for many things in the entire body. He then gives you individualized remedies each day for your specific body. In addition, he uses a percussor to release fascia and cranial problems. This is just some of the techniques in the session. another thing: He gave me a test called a FACT test...to test for neurotoxins in the brain (it is used in court to determine if there is toxin exposure in worker comp cases). I failed it. It was really helpful to see that info. No one else had done this for me. He really honed in on WHERE the toxins, ammonia, lyme were in the body.

Hansa uses a CRT--computerized regulatory thermography machine...to diagnose also. It is amazing. From that, without seeing labs or my symptom list, the doc nailed 90 percent of my symptoms and also found that I had blood backflowing to my brain that no one else had found. Hardly anyone is using this in the states, I think. Mostly used in Europe. Dr. J is an expert in this country in reading it.


The bottom line is, you get very individualed assessment and treatment daily for the one hour with the doc. Then you go to whatever treatments are recommended for the rest of the day: a lymphatic drainage machine, ionic foot bath, FIR sauna, light therapy/biomat treatment, massage/biomat treatment. Then you do it all the next day.

There is an understanding of circuits in the body. Teeth, organs, glands are connected. If one blows out in a circuit, all are weakened. This understanding also helps them treat the whole body. I am not sure many other docs use or have this knowledge.

Your whole body is getting jump-started into a place where it can heal, basically. I do not know of other clinics doing this type of thing. The others, (except Paracelsus), I believe are using abx of some kind and detox and supplements..some of them IV. This is different than Hansa. I think it is important to note this....I don't think people get the real difference...so I am trying to explain! :) The paradigm and the treatment is fundamentally different.

Hansa does not prescribe abx...because they do not believe in that paradigm of medicine...it practicies biological medicine..you can read about it online or in Dr. J's book. It is completely explained, with research, in the book. This is different than germ theory..where you kill bugs. This type of biological medicine gets the body back into a state of coherence and balance so it naturally repels them.

Again..it is clearly explained in his writing which you can find on the Hansa site or in the book..better than I can. Hansa prefers people to be educated about what they do there.

Also, this was important to me anyway: Dr. J studied, in addition to Chriopractic college, at the Paracelsus Clinic in Switzerland. It is run by an MD who practicies biological medicine. (Dr. Rau). He also studied in germany at a clinic and with Dr. Klinghardt (an MD) who is a top LLMD in the US. This was important for me to know before I decided to go there.


I also want to mention that you might want to compare costs of clinics that do day long programs before denouncing the cost. . I think Hansa is not any more expensive than the Sophia clinic (Klinghardt's) or the one in Arizona. In fact cheaper than the Paracelsus Clinic in Switzerland. They also have a loan program. I can also personally attest to the integrity of the policies. I know of people who paid the whole two weeks...were too weak to do some of the treatments..they stayed longer and did not have to pay again for treatments that they should have gotten during the two weeks. Stuff like that. Very fair.

I did the research before going. It was a lot of money that I did not have (I am single and divorced and was quite sick). Well worth it for me.

I read everything I could and googled all the testimonials I could (not from the clinic) and decided to go, finally, after reading his book.

The kicker for me was his book. I read it thoroughly.....I could tell by the book he was addressing things others were not. (I have many years of holistic and regular docs and lots of education on my part)

Namely: ammonia in the brain and body (causing twitching and brain fog, etc), leaky brain syndrome (both of which I have and was not being treated for). Also they found my jugular veins were constricted and blood was backflowing to my brain. After three years of extensive lab tests every three months (sent out of state), no one had found this before Hansa (I had two LLdocs..one studied under Klinghart for 4 years..neither of them caught this!!) Getting that fixed was a big deal for me...totally helped brain fog and head pressure.

anyhoo..sorry so long! just trying to be clear so folks can know the difference and make informed decisions. I would have been glad for this info before going. others have written about it, too.

and....do I even need to say this?? i do not benefit in any way by stating all of this. if plant stem cells had done the job for me, I would be talking about them instead.....or artimisinin, or whatever. this is just my
experience.

just a suggestion: do the research. read the publications, don't take any person's word. read everything you can from everyone before making a decision. how can we judge anything unless we experienced it :)

good luck!!
Nancy

ps..emailing me with any specific questions is fine, too
Posted 4/2/2013 10:55 PM (GMT 0)
Nan is correct, Dr. J. doesn't do normal chiropractic.  

I just wanted to add that your average chiropractic student must spend more study hours in college compared to an M.D. (I wonder if most people know this).

Below shows charts comparing chiropractic to md's:

http://www.yourmedicaldetective.com/drgrisanti/mddc.htm

Denise

Posted 4/3/2013 12:14 AM (GMT 0)
Wow Nan! Thanks so much for that thorough explanation! You have definitely put my mind at ease for the few lingering questions I had for myself.
Posted 4/3/2013 1:35 AM (GMT 0)
3 months is not long enough. I felt horrible for the first 6 months of treatment and then started to turn the corner. I felt like I herxed the entire first 6 months!

Although, keep in mind that some people just don't do well on certain abx. Doxy is known to be very hard on some people. Your LLMD may need to change it to another abx. You do need to be taking a cyst buster (Flagyl, Tindamax, or Grapefruit Seed Extract). It does cause intense herxing because it breaks up the cysts, filled w/ bacteria, so the doxy can then kill the spirochete. You may want to ask your LLMD about starting w/ GSE instead, as it can be milder. Also, most LLMDs recommend pulsing Flagyl to give the body a break in between.

Also, it's a fine line and balancing act. You want to kill the bacteria and will have some herxing from it, but you don't want it to get dangerous. For example, my first LLMD put me on 3 abx. at high doses w/in 1 week and I herxed so bad that I was vomiting, could barely walk, couldn't eat or drink. He ended up decreasing the dosage and it was then more tolerable. Unfortunately, feeling bad is part of the lyme treatment, sometimes for months and months, but it needs to be safe and you need some breaks. Treatment is meant to kill the lyme, not YOU!

As far as nausea, I had tons of it before abx. At one pt., I had daily vomiting before I was diagnosed with LD. My LLMD diagnosed me with bartonella and put me on Rifampin. Literally, within 4 DAYS of being on Rifampin, the GI problems including nausea, belching, bloating, etc. started to subside! Bart really attacks the gut. Lyme does also. The only time I have GI problems now is during a bad herx after starting a new med. My LLMD said that she sees this w/ a lot of her patients. She said that most of her patients are nervous about starting abx. because they have GI problems already, but that 80% of the time the GI stuff goes away with abx. treatment.

So, if you had nausea before starting the doxy, it's more than likely still from the infection. If it started up after starting the Doxy, then it's from the med. and your LLMD may need to change to something that's easier on the stomach. Also, make sure to take all of your meds. w/ food, even if the script says not to. That's what my LLMD told me to do. And see if your LLMD will prescribe Zofran for the times when you are herxing bad and very nauseous. The 8mg dissolvable (under the tongue) tablets work really well for me. It also makes me groggy so if I'm herxing bad, I'll take it before bed and it helps me get the sleep I need.

My personal opinion is to stick with the abx. for longer to see if it's effective.

Make sure that you are detoxing a lot, drinking TONS of water, eating very healthy, sleeping and resting as much as possible, and talking to your LLMD about your symptoms a lot. Don't push yourself to get stuff done right now. I tried to do that at first and eventually realized that I needed to focus on my health. Now, I'm doing better and able to be more productive. You'll get to that point also.
Posted 4/3/2013 1:41 AM (GMT 0)
Mystery,
Thank you so much for sharing your experience. It is so helpful for me to hear all sides.

Now I must deliberate....
Posted 4/3/2013 12:40 PM (GMT 0)
This is not aimed at anyone in particular -

We need to remember that herxing is not okay to do for more than a few days!! If you are herxing for months, then something is wrong!

Herxing is the body's way of telling us that it's overloaded and having trouble dealing with it all - the infections and the toxins. Even if our symptoms aren't severe, our bodies are at a weakened state while dealing with these infections.

There is all kinds of literature about what herxing - or a healing crisis as it's also known as - is, but not so much about what it does to the body, and the dangers of it - for some it can be life threatening, but for most it's just a matter of the body having to deal with the increased symptoms. Although, do we really want to use up valuable energies having our bodies trying to deal with a herx or do we really want those energies directed at healing? There's a reason it's called a 'healing crisis' - it's because no or little healing is taking place when a herx is happening.

Besides, I have my doc's warning - smilewinkgrin - "Don't let me catch you herxing for more than 2 or 3 days, there's things we can do about it!" Giggle! That's enough for me!!! LOL!!!
Posted 4/3/2013 4:17 PM (GMT 0)
well said, Traveler! ditto
Posted 4/3/2013 10:38 PM (GMT 0)
LOL! Thanks Nan!
When people allow the herxing to go on and on with no real end in sight I just worry!! The old adage of 'no pain, no gain' just doesn't work with these infections!! Of course there are exceptions to every rule, but for the most part, don't put up with herxing for more than a couple of days!

I have not herxed more than 5 days in a row...and when my doc found out, I got an earful!!! LOL!! Herxing for weeks is not a requirement to heal from these infections, plain and simple.

If I'm not healed from these infections yet, I'm really close - like 80 - 85% healed - and I've had these infections for most of my 50 (in 2 months) years, so if I can heal without major herxing, most anyone can!!
Posted 4/3/2013 10:55 PM (GMT 0)
I think Traveler is so right - I didn't know anything about how to handle herxing, or about detoxing until I discovered this forum. I herxed non stop for 5,5 months and I'm suffering the consequences now, I wish I discovered all of you before I started treatment.

She's a wise one smilewinkgrin  !!!!

 

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