posted
I've been diagnosed with the Brazilian version of Lyme's disease approximately 7 years ago. I was under treatment using phytotherapic medication along with antibiotics and my doctor managed throughout the years to keep the disease under control until the latest spell, where she though advisable to treat directly with antibiotics. Under her advice I looked for a specialist, who is a neuro-immunologist, and who prescribed a four month treatment with doxiciclin 100mgs 12/12h. He also said that at this stage my disease became auto-immune and that it was very likely that I had a small amount of active borrelia.
After approximately one week of treatment I started feeling slightly ill, with muscular and skin aches and pains and nausea. After another week I could barely get out of bed, had red rashes all over my body, ran 39oC fever and my immune system counts were lowered to the bare minimum. The medication was suspended and with the help of my doctor who is also acupuncturist I'm slowly restoring my health. I will run another blood test in two days to check my immune system.
Has anyone experienced this? what to do next?
Posts: 5 | From Brazil | Registered: Feb 2010
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
It sounds like a herx to me. I usually herx about five days after starting a new antibiotic.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
I herxed three days after starting doxycycline at the same dose as you.
I hurt too much to get out of bed for 3 days, and then felt bad but somewhat functional for another week, and then got back to almost as good as I felt before starting the doxy.
I stayed there for 2 months, with a few flares, and then finally had a few almost normal days before having some symptoms again, so I think I am beginning to improve now, in my third month.
I have only been sick for about 9 months.
I have read on here that some people have mentioned having a herx that started two to four weeks after starting the antibiotic.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I herxed the whole time I took doxy and still feel
like I need to take more doxy. I would say it is a
great kill. And the rashes may be showing like mine
did, that is not all you have. Many test positive
for RMSF, etc. etc. As for what to do that will be
between you and your Doc.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You need a better doctor. There is no such thing as "a small amount of active borrelia" in the inconsequential sense that your doctor implies. It's like a small amount of antrax.
As you did, good idea to stop the doxy with the kind of rash you describe. With your current doctor non-lyme literate, if you have reactions, you need a good LLMD who can interpret what is going on.
Could be a herx or something else. If an allergy, it could get worse. I'd stop it. There are other avenues that won't involve "had red rashes all over [your] body"
Another test in a few days will not matter. If you have borrelia at all - you need a doctor who knows more about it.
If you see a L.Ac. (is that the term you give acupuncturists in the U.K., too?), does she know about andrographis? It has been the best herb for me.
But, do I read this correctly - the doctor who says "small amount of lyme" - is that the same as the acupuncturist? If so, I'd find someone new.
I can't take doxy, either, as my body breaks out with a dozen silver dollar rashes that are so painful and itchy hot it is unbearable. I used to be able to take it but, then that changed.
Even with many trials, far apart, doxy still does not. I simply cannot tolerate it. But I've done much better with the herb andrograhis (but still a long way to go). I'll be back with some links for you on that.
============
Backing up, you said the Brazilian version of Lyme disease - what is the strain of borrelia? You may need drugs that are different from those used for the lyme strain.
And, were you checked for other coinfections such as babesia and bartonella? They have coinfections in Brazil, too.
I know this must be discouraging but it can get better. I just hope you can find a truly educated expert. Have you explored the Tropical Disease doctors? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Lyme treatment is very hard and the goal is to stay on antibiotics until symptom free. For some this means weeks, months or years.
It sounds like you are experiencing the very normal and classic Herx reaction, it will occur on and off throughout treatment. The disease is dying and forming toxins, which causes increase of symptoms, old symptoms to reappear and even new ones. You can read more about herxing here: http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=35
The Lyme specialist who is treating me is involved in the research of the Brazilian strain of Lyme (a 'L' shaped form of the spiroquete Borrelia burgdorferi sensu lato (mutant). Maybe I didn't express well his thoughts. I'm at the auto-immune stage of the disease.
The research here is fairly new and there are no specialists and the network of support you have in the US.
will lead to a text writen by the hero who is conducting the research, and explains the differences between the Brazilian and other Lyme.
As to the reaction, the worrysome result was the blood test's very low count of my immune system markers(sorry for the poor english - maybe this is not how you call it). My doctors don't think this is herxing. They think I cannot have doxiciclin, which is a medication used for our Lyme too.
I will check all the suggestions sent to me.
If there's more you know about non-antibiotics treatments, I'd appreciate immensely.
PS. I do a special diet to help my immune system; exercise and jog every second day; took recently a forced half-year sabbatical and rested and slept and ate for six month; meditate; do things I love and have good friends and family... Even though I experienced this 'hiccup' I'm fairly ok and was happy to see that even though I tested positive, this time I wasn't experiencing the awful state I was in when first diagnosed.
Lali
Posts: 5 | From Brazil | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks for the link.
What is the longest you have treated for one stretch at a time? Was it just one antibiotic or several in combination - and rotation?
How do they determine the difference in on-going, unresolved infection and the "auto-immune" stage?
Some doctors are far to quick to declare a patient auto-immune when they really still have an active infection. Just wondering how your doctors tell the difference.
And, currently, is the treatment for the auto-immunity helping? It does not involve steroids, does it? I know you said you are doing a very small dose doxy but are not tolerating that well. If some sort of steroids are also part of the plan, that could be connected.
Were you assessed for other tick-borne infections? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Your doctor studied under Allen Steere so his perception of lyme disease as it exists in America is not accurate. The observation of your doctors in terms of persistence is similar if not the same as most of our doctors. Please point your doctor to ILADS for more information.
As far as autoimmune, my sister developed autoimmunity once she started treatment. I'm told that borrelia inserts it's DNA into ours and our body views our tissue as foreign. I think the idea is that autoimmunity will resolve with treatment.
Your symptoms sound like what many if not most of us experience when starting treatment. Detox is imperative for many of us to be able to tolerate the treatment. Some think it is the toxins that make us sick, even when not in treatment. http://www.townsendletter.com/FebMar2006/lyme0206.htm
Some of us don't make enough of the right kind of antibodies to effeciently remove the toxins and we will get even sicker with treatment. You can get genetic testing to determine if you are in that situation. http://www.chronicneurotoxins.com/
Some of us have methylation cycle issues or PKU issues which make detoxing borrelia die-off harder. Poryphins can be an issue.
The dose your doctor has you on is low compared to what is needed to beat lyme disease.
The book (written by a science journalist) called "Cure Unknown" will shed some light on the nature of lyme disease and the political battle that is going on in the US over the nature of chronic lyme disease. http://www.cureunknown.com/
edited to add: I am told that borrelia releases heavy metals when it dies. Adding a heavy metal binder can be very helpful in reducing symptoms from die off.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Here, too, there is a contingent of researchers who talk about an "auto-immune stage" and claim that the borellia are all, or "mostly" (!?) dead. If one's immune system could handle "a small amount of Lyme, then we wouldn't have Lyme to begin with- Lyme is a living organism that <i>grows</i> in you blood. For some reason some researchers seem to have trouble thinking logically about Lyme disease! Doctors are in a quandery because they don't know who to believe. This is horrible for the people actually dealing with Lyme.
What was the appearance of the rashes? If any circular or semicircular or bullseye-like patterns were evident, you can be sure it is part of a herxheimer reaction and you should probably stay on the doxy. If you go off the doxy for now, you definitely should be on another antibiotic. There may be several forms here, too, but treatment that works seems to be similar for all. You are definitely doing some good things for it, but you've got to keep battling the lyme on the micro level, too. For me the combination of clarithromycin (they usually use the brand name 'biaxin' here), and Amoxicillin (1g/6g daily, respecively) was used to replace the doxycycline I was initially on (with cefuroxime axefil). This was much easier on me, but that could be because I was over the main part of the "herx". I hope you, too, are past the worst. Be very carefull about stopping abx treatment altogether, though. Lyme is very nasty. DaveS
[ 02-21-2010, 02:25 PM: Message edited by: HaplyCarlessdave ]
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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WildCondor
Unregistered
posted
The Doxycycline should be 300-600 mg/day, not 300 mg/day. Stay out of the sun!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- " . . .If there's more you know about non-antibiotics treatments, I'd appreciate immensely. . . ."
=========================
All this is to compare and contrast - and to be sure all the bases are covered. All of these Rx plans incorporate support supplements; some of the authors address only the complementary approaches but these are authors who often blend - and even if plans vary, all authors listed are ILADS-educated, in that they've read and studied in detail, etc.
The science of the spirochete must be understood and respected in order to conquer. All below is still just a basic set.
================================
* This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . .
- Full article at link above. ==============================
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
by Prof. Robert W. Bradford and Henry W. Allen
EXCERPTS:
. . . A discovery of great importance relating to a toxin produced by the causative agent of Lyme disease, Borrelia burgdorferi, has been linked to a similar toxin produced by the organism Clostridium botulinum (botulism) *. . . .
[extensive explanation of:]
* Lyme Disease Toxin . . .
* Action of Toxin . . .
* Dietary SUPPLEMENTS in Lyme Disease . . .
. . . .
- Full article and great photos at link above.
===================
* as he compares the effect of the borrelia toxin with that of Botulism:
posted
Wow! Thanks again for all the information you sent me. It's going to take a while to process all of it. As to the question regarding how to know whether we're in an auto-immune phase or not, there's a blood test for it. I don't have it's name with me right now, but will post it when I have it. Thaks for your help and compassion! L.
Posts: 5 | From Brazil | Registered: Feb 2010
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posted
Wow! Thanks again for all the information you sent me. It's going to take a while to process all of it. As to the question regarding how to know whether we're in an auto-immune phase or not, there's a blood test for it. I don't have it's name with me right now, but will post it when I have it. Thanks for your help and compassion! L.
Posts: 5 | From Brazil | Registered: Feb 2010
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Keep taking it!!
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
To Keebler Member # 12673 - the name of the exam to determine whether the disease is autoimmune is Intracelular Antigen, auto-antibody (FAN).
Posts: 5 | From Brazil | Registered: Feb 2010
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