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Posted 4/18/2012 2:10 PM (GMT -5)
Hi folks,

I just wondered if anyone who has finished treatment (or relapsed) could give me some advice?

I have been off my antibiotics for nearly three weeks now. In some ways I feel much better since then - I am less tired, can go out in the sun again (yay!) and have no thrush or stomach problems any more. But, my nerve pain has got a lot worse.

No-one knew if the nerve pain I still had at the end of treatment was perm damage from the antibiotics or lyme, if it was active infection still or if the antibiotics were causing it (tinidazole). But, we decided to stop the antibiotics because all my other symptoms were long gone. Could my nerves be healing now I have stopped the antibiotics, and if so would this cause pain?

How long would it take to know if I am relapsing, or could it just a be long slow decline?

Any thoughts would be great,

Kirsty 

Posted 4/18/2012 6:20 PM (GMT -5)
Hmmmm. I have been off antibiotics also (over 3 months now - yay!) and there are days my nerve pain is still there. However, I am on neurontin for what I consider permanent damage from the lyme infection. Some days, no pain, other days severe but not longlasting. If your other symptoms are still at bay, I would think that you are not relapsing but maybe your body is still struggling to battle the infection on its own. I also find that my joint/muscle/nerve pain are worse with eating certain foods such as inflammatory foods like dairy.
Posted 4/18/2012 6:35 PM (GMT -5)
springsjean, how long did you take roxy? What did you take with it?
Posted 4/19/2012 5:11 PM (GMT -5)
 

Worrypot,

Have you taken anything to address the neurotoxins from the Lyme at any point during your treatment?  If not, you might want to consider getting on either an herbal brain/nerve cleanse or cholestyramine, which binds neurotoxins. 

A couple of other sources of neurotoxins that could be contributing are nightshade vegetables (which contain solanine) and heavy metals. 

 

Posted 4/23/2012 3:23 PM (GMT -5)
Uh-oh, seems like a mild relapse after all. Back to having a few headaches, bit of OCD rearing up again, cough started and sore shoulder has reappeared. That's been nearly four weeks now, so it took quite a while. Perhaps just need another few months of antibiotics?

Kirsty
Posted 4/23/2012 6:38 PM (GMT -5)
Hi worrypot,

Just curious if you have been detoxing at all?  You may NOT be relapsing but experiencing toxins left over from the bacteria and the medicines.. 

Have you read this article about toxins?  It may explain why you are feeling the way you do:

http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382/?tag=content;col1

Hope you feel better,

Denise

Posted 4/24/2012 12:13 PM (GMT -5)
Hi Denise,

My detox regime has been the same since I first got a diagnosis - dry brushing, warm baths, plenty of water and as much exercise as I can (I have built up to regular running now). Pretty much all of my symptoms had gone, but are clearly increasing again since being off antibiotics. Given that the only change I have made is stopping the antibiotics, I can't see how it can be something else? But, if there are any other explainations then I'd be keen to hear them.

Thanks for your help,

Kirsty
Posted 4/24/2012 6:05 PM (GMT -5)
Hi again Kirsty,

Are you adding epsom salts and hydrogen peroxide to the warm baths?  That by itself is a huge help.

What is your diet like?  That could be part of it as well... 

As far as antibiotics, from what I have read, they cause viruses which could be another possibility for feeling the way you do...

Many people switch to an herbal or alternative protocol when they stop conventional antibiotics.  There are many, Cowden, Buhner, Jernigan, etc.  I personally tried the Nutramedix Samento (but only the Samento) and that didn't do much for me.

If you can afford it, I suggest buying Buhner's book "Healing Lyme" from Amazon and Dr. J's book (again, I don't think it's available on Amazon but from his site, I don't know why):

http://www.hansacenter.com/books.php

Also, Dr. J. wrote this article which explains why people only feel good when they are taking antibiotics:

http://www.drjerniganblog.com/articles/infections/622

Hope this helps and that you feel better (please don't think relapse, okay?),

Denise

Posted 4/25/2012 6:40 AM (GMT -5)

Hi Denise,

 

Thanks for the information, which I read with interest. I know a lot about bactiophages, having studies zoology for four years, and unfortunatly the articles you linked to to don't quite make sense. Bacteriophages are viruses which infect and kill bacteria. So, yes, Dr J is correct that this will cause an increase in toxins being produced - as we all know, when lyme bacteria die they produce toxins. However, I can't find any evidence showing that any species of bacteriophage does actually in infect lyme disease bacteria and cause toxins, nor that antibiotics could in any way influence this. It seems to be merely his own personal opinion. Anyway, surely I would have been iller on the antibiotics if this was the case, not less ill?

 

The other point Dr J raises is about why people feel better on antibiotics. I know that not all antibiotics kill lyme disease, but it is clear that the antibiotic regime I was on was actually killing the bacteria, as almost all my symptoms vanished progressively over time. This would not happen if the lyme were merely being kept in check at the same level.

 

I don't understand how Dr J can on one hand say antibiotics are dangerous because they kill lyme bacteria and cause toxins to be released, and in another article argue that they don't actually kill the bacteria. Sounds more like a sales pitch than science to me I'm afraid.

 

My diet is fine, and has also not changed through the whole course of my illness. I have made an appointment to discuss another 3-month stint on the antibiotics, as I had previously been warned I might need this.

 

Thanks,

 

Kirsty

Posted 4/25/2012 4:58 PM (GMT -5)
Hi again Kirsty,   The way I interpret his articles (which are only tiny pieces of information from him as he has written so much more, Dr. J. is a scientist, researcher, inventor and at one time very sick with chronic lyme himself) is that he stated that antibiotics kill “ some lyme spirochetes ” as stated below in one of his articles:   “When a doctor uses an antibiotic and kills some Lyme spirochetes , there is a resultant Jarish-Herxheimer (Herx) reaction--i.e., a worsening of the patient's symptoms in response to the increased release of bacterial die-off toxins. The toxins are dumped into the bloodstream and circulated throughout the body, until they can either be eliminated by the body or lodged in areas of weakened tissues. As neurotoxins, they are preferentially taken up by nerve tissue. These lodged toxins are one reason why symptoms can persist even after the actual Bb infection is gone, because the toxins can remain as an irritant in the tissues for years.”     So basically, I believe Dr. J’s point is that the toxins that are left over are dangerous.     “An astonishing new finding was released by John Travis in Science News (July 2003;164). Travis reported that research performed by John F. Prescott found that certain antibiotics, such as the fluoroquinolones, the class of antibiotics that includes the name-brands and generic brands of Levaquin[R], Cipro[R], Tequin[R], and Avelox[R], actually are known to trigger a type of virus called bacteriophages (viruses that can infect bacteria) to change the genetic sequencing of the bacteria, causing the bacterium they have infected to start producing toxins. These viruses can act as genetic delivery vans, invading bacteria, such as spirochetes, often lying dormant, until activated by a change in the host (your body's) environment. Once activated, these viruses insert their toxin-generating genes into the bacterial chromosomes. These viruses can turn basically harmless bacterium into killers through this genetic sequencing of toxins (Travis 2003).   So now we see that not only are these toxins released through bacteria die-off and not only can antibiotics actually increase the production of the toxins, but these viruses can cause the bacteria to rupture, spilling their toxins into the body (Waldor 2004).   In truth, a severe Herxheimer reaction is a sign of poor elimination pathway drainage, poor organ support, and poor treatment by your doctor. The bodies of most chronic Lyme sufferers are toxic dumps to start with, therefore, if a doctor does not get the pathways of elimination open and working, the body grows even more toxic as the bacteria begin to die and their toxins dump.   Many doctors think good treatment is indicated by the fact that you feel like crap, i.e., worse than usual, which they feel confirms that they have selected an effective antibiotic. Most of my chronically ill patients cannot afford to feel worse just from the treatment. The person with Lyme disease has already suffered enough; they don't need to go through a "herx" just to prove they have Lyme disease.”   In any case, I never met a person who died from alternative medicine but I have known people who have died from long-term antibiotic use and I don’t want that to happen to you or anyone else. If you want to continue on antibiotics, that’s your choice.     I just wanted to point out that you have other options.   P.S.:  If you watch the first 20 or 30 minutes of this lecture given by Dr. Thomas Rau (who runs the Paracelsus Clinic in Switzerland and who Dr. J. trained with) you may understand better (the entire video runs for about 1-1/2 hours):   http://www.marioninstitute.org/biological-medicine-network/resources/videos/dr-thomas-rau-lyme-disease-talk   Wishing you well, Denise
Posted 4/25/2012 9:11 PM (GMT -5)
If you just got off antibiotics/herbaLs, I don't know if it would be a relapse so much as going off antibiotics too soon, but I did something similar and it was 6 months of a long slow decline that turned fast and miserable at the end.

If you still have symptoms you should still be treating! I know it can be disheartening to realize you have to keep treating, but when I felt worse after stopping antibiotics/treatment I convinced myself that all my symptoms were either normal or caused by other things, and that has meant that while last June I was 80-90%, I'm still at 60% after re-starting treatment in December.

From the LLMDs/NDs I have talked to, if you relapse-replase (stop treatment when you have NO symptoms, and years later relapse) it is not nearly as hard to treat as the original infection. BUT if you still have the original infection, you are just letting it grow again, and potentially become resistant.

If you are feeling worse I would get back on some sort of treatment right away
Posted 4/26/2012 2:33 AM (GMT -5)
Hi folks,

Denise - thanks for further info. You mention that Dr J is a scientist, researcher and inventor - I assume he is also actually a medical doctor (i.e. he doesn't just have a PhD?). Just wondering... Anyway, I have read lots of his work, and my own personal opinion is that his science is entirely flawed. While some of it is based on fact, the majority is entirely conjecture and personal opinion. It also all contradicts itself. For example, anything that kills a high enough percentage of lyme bacteria will cause an inital herx at the start of treatment, as they contain natural neurotoxins. Therefore, herbals would also cause an initial herx reaction if they were working. You can clear them out of the body by detoxing, but not fast enough - my herx came on withing five minutes. I also find it interesting that his book isn't available on Amazon - that in itself concerns me, as people only block amazon from selling their books when they want to control sales and keep prices high. And, of course many people die of alternative medicine (see http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(06)70563-1/fulltext for a specific article about one alternative lyme treatment, but many people also die through lack of appropriate treatment, and also suicide). I guess we'll have to agree to disagree on this one.

Zeusy - thanks so much for sharing your story. Yes, I think it is really that I came off the antibiotics too fast rather than a relapse. I was so keen to get back to normal that I probably wasn't 100% honest with the docs about how well I was. I phoned the doc this morning, and they are looking over my notes to see if I can get the other 3 months treatment my consultant had mentioned as a possability. Unfortunatly my own GP is on holiday and I'm not sure the others will agree to treat me. Will have to wait and see.. How long did it take for you to start having symptoms after coming off the antibitiocs? It's taken me four weeks to be certain it's not gone yet.

Posted 4/26/2012 6:33 AM (GMT -5)
Hi Kirsty,

So sorry you have these opinions.  If you really knew about Dr. Jernigan, you would know that he completed more college years compared to an M.D., that's public knowledge.  And all of his work has been proven.   But one would only know that if they researched this brilliant doctor. 

My last link:

http://lyme-aware.org/news/lydias-blog/355-kansas-dr-david-jernigan.html

All I can say is I find it very sad that you don't understand Dr. J's thinking and his science.  Some people can think outside the box, other's simply think antibiotics are the answer until they get so sick from taking long-term antibiotics that they turn to alternative medicine.

Please don't claim you read lots of his work because if you did, you would know about his education, etc.

Best of luck to you,

Denise

Posted 4/26/2012 7:15 AM (GMT -5)
Hi Denise,

Debate is always a good thing - it is important for people to hear both sides!

I have read lots of Dr J's stuff (it frustrates me for its scientific innacuracies and blatent profiteering), I just hadn't seen anything referring to him actually being an M.D. so I wanted to clarify his use of the title Dr. While anyone with a PhD can legally use the title 'Dr', I do feel it is misleading using this in a medical context when people will naturally assume he is a doctor of medicine - he should perhaps state this more clearly (I assumed it as a given). Incidentally, I also have more years of education than an M.D., but that doesn't mean I'm a medical expert even though I have studied physiology, microbiology and immunology in depth.

I can, and indeed do, think outside the box. I have read screeds just about every treatment option going from all the different herbal protocols to rife machines and back again. I believe that antibiotics are the best option, and that some herbal supplements will also help people with lyme if used under the same careful supervision that you would get with an MD.

But, it's great that the protocol seems to have worked for you. I hope we both stay well in future :o)

Kirsty
Posted 4/26/2012 11:56 AM (GMT -5)
HI Kirsty/worrypot

Gosh you sound just like me! I was so desperate to be healthy AND so terrible at phone appointments that I would leave out symptoms, or convince myself that they were just "normal" parts of life!

I started getting symptoms within two weeks. By 4 weeks I made a phone appt with my previous LLMD (I am in Canada and originally saw an LLMD in the US. However, the NDs here are now allowed to prescribe antibiotics, so I now see the ONE LLND in Canada, and that way avoid phone appointments). His advice was that I could either go right back on one antibiotic, and see what happened, or wait a month and see. I waited a month, but at the end of the month I joined the private clinic, and the doctor there who claimed to be open to Lyme seemed very sceptical it was Lyme and wanted to redo blood tests and re-check for other things (all of which I had been tested for before). he also liked to throw out the "everyone gets tired" line. So I then wasted 3.5 months with him getting progressively worse.

In december (5.5 months later) I got back on antibiotics through my ND.

It is super tough and frustrating fighting with doctors, but I would say that if you talk to your GP and he wants to do a similar thing to mine- do a bunch of retesting, refer you to a Rheumatologist (which takes 6-8 months here in Canada) etc etc, push REALLY hard to avoid that and just get back on treatment. I mean, what are the chances you have developed some weird condition in addition to Lyme? And if your GP won't treat you, try looking for someone else. How did you get treatment initially? Did you see an LLMD?
Posted 4/26/2012 1:34 PM (GMT -5)
Hi Zeusy,

Wow, yes, sounds like we've had pretty similar experiences. I don't think many people realise that it's actually the last bit of an illness that is the hardest - when you feel pretty much normal you just want to leave all the meds and horrible memories behind you. It is also so hard to tell what is just your body adjusting to being off the antibiotics and what is symptoms returning. To make matters worse there is a stomach bug going around here right now which I caught, making it even harder to decide what was happening. But, it is definitely the lyme still - too many neural symptoms rearing up again.

Sorry to hear you had to wait so long until getting re-treated. Hopefully it won't take too long until you are ready to come off the drugs again. Second time lucky and all that!

I live in Scotland, and the situation here is a little different. My general doctor (GP) was the one who originally suggested lyme since I work outside. He's tried lots of other things which didn't work, and all my other tests were clear. He gave me a month of doxy while I was waiting for my lyme results to come back. The results were negative, which isn't surprising given the tests over here are well-know to be very innacurate. At that point my GP told me I didn't have lyme, but I insisted he refer me for a second opinion. There are very few LLMDs over here, and I had to go private for the diagnosis. Luckily my GP has supported me (although often questioned the use of long-term antibiotics till he did more research himself), and he has supplied the medication my LLMD recommended. This means it is free, as there are no prescription charges in Scotland. I've had to pay for the LLMD, but know I am incredibly lucky in many ways. Unfortunatly my LLMD is now retired, so its just me and the GP now...

I have thankfully just been given the go-ahead for three months treatment on doxy/tinidazole. I nearly cried on the phone I was so nervous in case the GP said no. Picked up the first months of meds this afternoon. Am not looking forward to the side-effects again on starting treatment, but have just taken my tablets (it's just after7pm here). Fingers crossed for the two of us!

Kirsty
Posted 4/26/2012 5:17 PM (GMT -5)
Oh, good I am glad Kirsty! And I am glad that you get your care for free, although I understand how tough it is with no LLMDs!

In Canada we have similar problems. No LLMDs and only on LLND in the entire country. Prescriptions are only covered if you have insurance, and even then only 20%. So it gets expensive fast. And our tests are also super inaccurate (I don't know if it is the same test)

Hopefully 3 more months will be all you need! Because I waited so long (and because my ND thinks I have had babesia all along, but it has never been treated) I am back in it for the long-haul. I've been back on antibiotics for about 5 months, and I still have a LONG way to go. That isn't the norm though- I was just both stupid and unlucky I think.

P.S. I am going to be imagining everything you write as being spoken with an awesome Scottish accent now!
Posted 4/27/2012 7:33 AM (GMT -5)
I don't think it's fair to say you were stupid - we are all experiments really, there just isn't enough known about this horrible disease yet. I think you have been really brave fighting get back onto the antibiotics again, it's a really hard thing to get your head around and even worse when you have to push to get the treatment you need. It's not in any way your fault that it's taken so long to get re-treated after you realised you were still ill... Keep the on going, and you'll get there in the end, and feel free to stay in touch via email if you like.

Kirsty
Posted 4/27/2012 7:34 PM (GMT -5)
Worrypot and zeusy! I happen to agree with your assessment of Dr. J. I have researched his "science" and determined lots of conflicting information present and not much if any clinical research that substantiates his various modalities for treating Lyme. Plus, he is a chiropractor by education and not an MD as you correctly suspected. Finally, IMO, he and his hansa center seem very self-serving in their methods. This said, some people swear by his methods and were evidently cured by his center.

With Lyme being such a personal illness with usually very personal treatment that varies by person, you have to find your own best path. My opinion of Dr. J is negative but that's Just me - others find it positive and that's okay too. One thing I do want to say is that you can be cured with abx and an abx/herbal hybrid approach. Youbwill not die from abx treatment. The ultimate goal is to reduce the level of pathogen load and toxin loads in your system to thebpoint where your own body can regain homeostasis and fight of the invaders abx detox itself. The paths to getting there are varied....abx, herbals, diet, supps, exercise, therapy, and any and all combinations of these. You guys sound like you have gotten a good handle on what you need to do - good luck and success in your journey!
Posted 4/27/2012 8:47 PM (GMT -5)
Thanks yazzer. I think one of the most important things is finding both a doctor and a treatment approach you are comfortable with. So while I am comfortable with use of naturopathic medicine in some instances (things like grapefruit seed extract, or some of the things like Ribogen and B12 which help support adrenals, all of which have solid backing in science and research), there are some other natural approaches I have no confidence in. I like my ND specifically because she has a very grounded background, and feels antibiotics are essential to treating Lyme (not the only way, just the best way). However, other people aren't comfortable with ANY natural approaches, while others aren't ok with ANY antibiotics! We could all beat ourselves up all day about our choices if we wanted to, but if it works for YOU that is what matters.

I do think sometimes that it is important though to still be careful with Lyme. I think Lyme patients are easily taken advantage of because we are so desperate and because all our options cost money- so someone suggesting their own special cure (not specifically picking on Dr J here because I actually know almost nothing about him and his methods) doesn't seem so out of place. My ND is ILADs trained, has a BsC, Masters, a couple of years specializing in something to do with neurology, plus her degree in naturopathic medicine plus the ILADs internship. She keeps up on research and is completely open with me on which of her treatments are solidly backed my research and which are more homeopathic with little supporting evidence. I typically decline the homeopthatics.
Posted 4/28/2012 6:44 AM (GMT -5)
Hi all,

I agree that everyone has to find their own path of healing just like I did and of course everyone is entitled to their opinions.   I respect other's choice of treatment even though I may not personally agree with them. 

Yazzer, just to set the record straight based on facts, a chiropractor must complete more college hours compared to a medical doctor:

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

Most people don't know this.

Worrypot, I am not going to debate anything because this thread has become to toxic and negative for me.  I prefer staying in the positive!  wink

Denise

Posted 4/28/2012 8:57 AM (GMT -5)
Deejavu,
I still check in once in a while too...still feeling GREAT after completing Dr. J's protocol!!!!!

Quick recap of my 2 1/2 year treatment which started after 4 years of no diagnosis: antibiotics for 9 months (sick from antibiotics and still only about 60% recovered upon completion); tried various combinations of herbals/supplements, including a couple rounds of teasel root and gradually got a bit better, but healing had really stalled out after several months of the antibiotics. I was VERY skeptical of Dr. J's treatment and when I read his book I thought he was a quack, but at that point I had two options available to me:

Travel nearly 4 hours to a LLMD and pay $350 cash for an appointment + various "required" tests before any treatment would be considered + "required" follow up visit 4 weeks later;

OR try Dr. J's at-home treatment (total 8 month treatment + book was less than $700).

I weighed out my options very carefully and considered the fact that I had already spent thousands of dollars on unnecessary allergy treatment (alternative allergist claimed all of my symptoms were caused by a particular allergen & I believed him until the exact same symtoms came on with a vengeance AFTER the season for that particular allergen was past and I got a second opinion...I gradually had started feeling better on the allergy treatment so I believed him; now I know the LD cycle of "healing"/relapsing and the allergy treatment had nothing to do with it) + all the herbals and alternative doctor visits I had already paid cash out of pocket for. I went into Dr. J's treatment VERY skeptically and I gradually got better and feel great now. I keep in mind that this could very well be the same thing that happened with the allergy treatment (cycle of healing/relapse) but right now I do feel great, and along the treatment path I adopted Dr. J's philosophy of mind/body/spirit healing (along with a positive attitude), and I wholeheartedly believe this is the key to healing, no matter what treatment plan works for you.

Post Edited (Tala3) : 4/28/2012 8:00:39 AM (GMT-6)

Posted 4/28/2012 1:05 PM (GMT -5)
Very much off topic, but yes, chiropractors do MORE school and more difficult school than MDs! I found a new chiropractor who I I love who has been telling me all about the school they do. Of course, I don't know the details as far as treating patients for things other than musko-skelatal issues. My chiro told me that in the US she could deliver babies, and here in Canada she is able to diagnose patients with illnesses that they should see a regular MD about (diabetes etc), but I haven't met any chiropractors here in Canada who do anything other than adjustments, accupuncture, ART etc. The good ones are really knowledgeable and open minded, but none of them seem to treat people illnesses- they mostly address symptoms or mechanical issues.
Posted 4/29/2012 7:10 PM (GMT -5)
Zeusy: great points! I indeed have a chiropractor who had. Lyme. Thus is the name with my acupuncturist - she had Lyme and they are great resources to correct mechanical issues and energy pathways in the body. But they are, at least IMO, not qualified to correctly research neurological pathologies. That is better left to an MD. Again, just my opinion. My set of shaman ladies which I like to call them of llmd, chiropractor and acupuncturist work very well in working with me to treat my Lyme and they do not push own books or products or centers to do it. But, as has been stated earlier here, whatever work s for someone is all that matters. And with many Lyme patients being in desparate straits at times, one should be very cautious of those that may be out to take advantage to profit from such desparation. Good luck to all with their healing!
Posted 5/6/2012 1:49 PM (GMT -5)
Hi folks,

Been away on holiday for the last ten days, but have now caught up with this thread again (if you fancy seeing what I've been up to I recently started a blog on travel and lyme at http://adventureswithlyme.wordpress.com). Thanks for all the comments - it is great to hear all the different perspectives out there.

I have been back on the antibiotics for nearly two weeks, and it was like a light coming back on. The foginess, diziness and confusion that was starting to come back has all gone again, and I feel pretty much back to normal. I will learn the lesson though, and make sure I don't stop too early again.

Good luck to all of you for your future treatments - lyme is a crazy disease, and we can all only do our best in working out how to fight it. As long as it works, that's all that matters... Anyway, I'm now off for a jog, as I reckon exercise is one of the best things I can do right now.

Kirsty :-)

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