aklnwlf
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posted
Have a new bull's eye rash. Haven't been treated since 2007. Going to my GP today. What's a good protocol for an early detection case of Lyme?
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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Keebler
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- Be sure, if told you need a lyme test, to explain that the bulls eye rash IS proof and it's too early to test, anyway. Still, no lyme test needed.
You need more than just an antibiotic. Flagyl (or similar) is vital to help keep just an antibiotic from turning the spirochetes into cyst form -- and then into chronic lyme.
Coinfections also need to be considered. Antibiotics won't affect some of those.
Not to start an argument or cause a headache for the doctor, still, it's important for them to know WHY this author says that a minimum of 30 weeks treastment - combination treatment - is required to cover the cycles of borrelia.
You can say that you know there are differences of thought, still would very much appreciate their reading this right there with you so you can know if they will be able to help you -- and, if so, to what extent.
Discusses differences in the methods of the IDSA from those of ILADS - and why you need an ILADS-minded doctor.
You now have to sign in to read, but anyone can sign up to do that. It's best to have this printed out, one copy for you and one for your GP so you can follow the text as you discuss the LIFE CYCLE of the spirochete and why 30 weeks matters.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007 -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- As for which antibiotic is best, I'm not sure. Burrascano's guidelines - the place to begin and then see if he's updated those. Dr. H's new book, too.
Doxycyline is more typical and can also affect ehrlichia (but needs higher dosing).
Doxy requires you have zero sun exposure, even in the care, cover up with white cotton gloves.
Minocycline is most often traded for doxy in the summer and it can help the brain more but is often more trouble for the ears (vertigo, nausea).
Most antibioitics are ototoxic. Liver support even before starting and all during may help protect ears as much as possible but also be very careful with sound.
When on ototoxic Rx, ears can be more easily damaged at lower decibel level than usual. In the ear pods are best avoided. Ear plugs / dB rated muffs when around even a blender, vacuum, hairdryer is really vital to help protect hearing. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Probiotics - go ahead and get loaded up on those before taking any new abx. Just keep a couple hours away from abx, both clock directions.
Oh, I know your GP may not be open to helping as much as would be best. But, with a brand new EM rash, my hope is that by taking in at least those two articles, you stand a chance at more than just a few pills of doxy being tossed at you.
Do NOT talk to the nurse, receptionist or ANYONE ELSE in the office about what your request is or that you have articles. Only talk with your GP. Also know that he/she may not have the freedom to treat you past a certain number of days.
They may also require a test. That just won't work, though, for a recent bite. They may not actually know that. My guess is that most GPs do not have the knowledge but that doesn't mean they may not want to learn more or help.
But their bosses may not allow it. Some insurance companies actually have anti-lyme "rules" for many doctors' offices that all doctors must follow to disregard lyme. Just be prepared while you hope for the best.
Be prepared as to if you can avoid sun or not so you know not to accept doxy if you cannot.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
& EAR PROTECTION (as least to some degree)
If you have access to a RIFE MACHINE, that would be a good thing to explore. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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hiker53
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Let us know what the MD says. Take pics of the rash!
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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GretaM
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Member # 40917
posted
Could this be a satellite rash?
Not a new infection, but a resurgence of the old infection?
Not that it makes a difference in abx combo or dosing.
Just curious if you might get bullseye rashes at the sight of any new bug bite?
I know I do, even mosquito bites turn into EM rashes.
Hope you can get some good abx combos.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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aklnwlf
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posted
I've never had a rash like this.
My GP prescribed 100mg Doxy 2x a day for 7 days and a steroid cream. I'm already herxing or something just on my first day.
Trying to get to a Lyme literate MD in FL that someone told me about.
OMG! I'm so worried.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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TF
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posted
I wouldn't use the steroid cream unless the doctor said it was absolutely necessary, like for your life.
Burrascano says that steroids are contraindicated in lyme disease and can make a case of lyme extremely difficult to cure, and in some cases cause permanent damage.
See these quotes:
"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (page 4)
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (page 12)
Why not call the GP and see if the steroid cream is optional.
I only knew of one good lyme doc in Florida and he retired in June of this year. I suggest you contact the lyme support groups in Florida for some names. See Support Groups on left side of page.
You want more than 7 days of doxy 200 mg per day. Get treated properly and stay on treatment until all symptoms are resolved. Then, stay on treatment 2 more months. That is what Burrascano recommends.
Also, I hope you know the warnings with doxy--no sun. Doxy can cause a severe chemical reaction to sunlight. It is not a sunburn. Rather, it is a chemical burn. Nasty isn't a nasty enough word for it.
So, wear gloves on hands when driving, and stay out of the sun.
A lyme doc will generally not give doxy in the summer for this reason.
Please be careful, and I wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
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- Please do not use the steroid cream. You are not on a comprehensive enough treatment protocol for protection against the chronic systemic damage it can do.
The dose you on is way too low. And it should never be just one Rx. A combination is important. There is also nothing to protect from the cyst form development. Steroids of any kind could be very bad.
Even a steroid topical can do damage, it goes right into the body within 26 seconds. There are so many other options for the rash area. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Not numbing, yet very soothing for various skin issues.
Aloe Vera Gelly (notice how clear it is, free of oils and lotions) - it calms heat burns so maybe will help calm chemical burns (from an insect bite, that is?)
Evid Based Complement Alternat Med. 2012;2012:375671.
Epub 2012 Jan 24.
Wound Healing and Anti-Inflammatory Effect in Animal Models of Calendula officinalis L. Growing in Brazil.
Excerpt:
. . . This experimental study revealed that C. officinalis presented
anti-inflammatory and antibacterial activities as well as angiogenic and fibroplastic properties acting in a positive way on the inflammatory and proliferative phases of the healing process.
The herb, STINGING NETTLE may soothe the skin (and the body) to compensate for the reaction by calming the the cytokine storm that is often part of a herx reaction. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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hiker53
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I agree--no steroid cream. Before I was diagnosed with Lyme I was given a steroid and I am convinced it made everything worse.
Lifting you up in prayer.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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Keebler
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posted
- You speak of the herxheimer reaction. What is your liver support? that is vital to help prevent / manage a herx.
Be sure to NOT lie down for at least 30 minutes after taking doxy (maybe one hour, check the instructions) . . . and take in the middle of a meal that does not include dairy.
So, I assume they did not fill your request for FLAGYL, too, to help prevent the formation of the cystic form. Can you do GSE, then? Something should be done to help - or at least try to prevent that as much as possible.
GSE is grapefruit seed extract, and that can be hard on the stomach but there are ways to work with that (capsules with food, not drops), should not be taken at the same time. I'm really sorry they did not really help you there.
Did they even read why you wanted the flagyl? Or were they at all receptive to your questions?
Still, you may get lucky. It can depend upon the strain of Bb this may be (Weintraub has written that is why some do okay with such a low dose . . . some strains aren't not as bad as others).
Still, there are some things you can do for yourself. In addition to liver support, certain supplements may be in order at this point until you can get to a LLMD.
I would consider at least one of these, a couple hours apart from both the Doxy and from your Probiotics: Allicin, Andrographis, Berberine, Olive Leaf Extract (each has multiple actions). . . only very particular brands but until you could locate those, the best you can find. Not all are equal.
If you want more detail on any of those, I can post -- others can also add their suggestions.
I think you need more, however that is to happen. [Although I am not a medical person of any kind.
I'm so sorry that all this is popping up for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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hiker53
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ILADS guidelines with Dr. B suggest 200 mg of doxy twice a day to try and kill the Lyme quickly.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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Keebler
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- I'll go ahead and post detail about my suggestions (until you can talk to a LLMD or LL ND). That way, I won't forget in case you need it:
OLIVE LEAF EXTRACT (OLE) Links -
Posts: 48021 | From Tree House | Registered: Jul 2007
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aklnwlf
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posted
Thank you all so much. I stopped taking the Doxy today because it was making me so sick. Won't do the steroid cream either.
Heading to the beach Friday for a short vacay so decided not to chance that Doxy reaction to sunlight. Had it once before and got burned while driving my car.
I'm not ready to deal with lyme and co again but looks like I have no choice.
I'll let you all know what's going on.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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Keebler
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- You "stopped the doxy" but you could STILL BE VERY SUN SENSITIVE for days, or maybe even a couple weeks. This is really important to take into consideration. You might want to check on that.
Same with when stopping any antibiotics that are ototoxic. Damage can still happen from even normal sounds for weeks, maybe longer. So still protect your ears from even moderately enthusiastic volume.
Hope you have a great time at the beach . . . with a grand beach umbrella (somehow also managing to avoid "bounced" sun). Soak it all in - the atmosphere, the humanity, the joy (just not the direct sun). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- I'm just a bit perplexed - and concerned with no treatment at all and this particularly vital window of time. Maybe I did not say this so, to be sure you know, those supplements listed could help as you lay off doxy, to give you some level of protection, at least.
I can see you may not want to take the allicin due to the garlic smell, or the andrographis as it can make you sleepy and a few can get a rash. But the other two options (Berberine or OLE) should help in very important ways for you until you can figure out the next step. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
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The second time I was infected, I waited 2 months to treat. I'm now in a world of hell by just waiting 2 months.
Take minocycline. It won't make you sun sensitive.
"What's a good protocol for an early detection case of Lyme?"
A good doctor who knows how to recognize a rash.
I've had two rashes. The first one was misdiagnosed by several medical practitioners. On a whim I showed a new doc the rash because it seemed weird (it hurt, itched and DID NOT look like a classic bulls-eye).
She diagnosed it on the spot and an erythema migrans rash and started me on doxy. No testing necessary.
I got a test anyway a month later. I still didn't believe I had Lyme. I had no memory of a bite. Sure enough, a positive test by Labcorp.
Posts: 2839 | From California | Registered: Jul 2012
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posted
According to the new ILADS guidelines for EM rashes you should:
"Clinicians should prescribe amoxicillin, cefuroxime or doxycycline as first-line agents for the treatment of EM. Azithromycin is also an acceptable agent, particularly in Europe, where trials demonstrated it either outperformed or was as effective as the other first-line agents. Initial antibiotic therapy should employ 4–6 weeks of amoxicillin 1500–2000 mg daily in divided doses, cefuroxime 500 mg twice daily or doxycycline 100 mg twice daily or a minimum of 21 days of azithromycin 250–500 mg daily."
There is no mention for the use of any cystbusters and now they recommend 200mg of doxy per day instead of 400mg per day.
So if a doctor prescribes someone 3 weeks of azithromyicin for an EM rash,that would meet the ILADS's guidlines.That is surprising to me.
[ 08-01-2014, 10:36 AM: Message edited by: rzh1 ]
Posts: 41 | From usa | Registered: Nov 2012
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lpkayak
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Ilads changed to doxy 200 mg a day? What is going on? Is there an explanation why?
Does anyone have dr h' book? What does he say
If they changed it i want to know why...a real reason or pressure from idsa
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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'Kete-tracker
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Didn't studys published by Dr Sapi show 100 mg b.i.d. is not enough to "lyse" the critters, but just either suppress them into inactivity or prod them into converting to their cell-wall-deficient form? Seems to me 100mg a day for many [over-weight] adults today would definitely only be a "bacteriostatic level"!
As for recomending "a minimum of 21 days" of Zithromax (azithromycin), I could swear the 'Burrascano guidelines' said that "Zith"- by itself- wasn't particularily effective against borrelia Burgdorferi. What's going on?
I know it's good as an intracellular "addition" to something like Ceftin, but... by *itself*?
And why is azithromycin "an acceptable [first-line] agent, particularily in Europe"??? Posts: 1233 | From Dover, NH | Registered: Sep 2008
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'Kete-tracker
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of course, I meant to write, "Seems to me *200mg a day*...."
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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