posted
Got a a rash in mid june, wasn't sure if it was lyme but compared to the pictures online it looked similar to it. I had 2 blemishes, The only thing is that my rash had only one central clearing, not like a bullseye that has 2 rings and then a central clearing in the middle. ALso my rash didn't expand like it says online. It jus stayed the same size, approx. the size of a nickel.
Anyway, Just to be safe I visited a regular doctor in late July who put me on doxy for a month. I started taking the doxy on the first week of Aug. He put me on 200mg a day, but i requested a higher dose. so i upped the dose to 400mg and did the course for a month. I didn't have any symptoms before starting doxy (no fever, no fatigue, no joint pain).
While on the treatment i noticed i was more fatigued than usual, but read that it could be a side effect of the doxy itself. I finished the treatment with no real herx or any other symptoms.
I decided to get bloodwork done in Oct. (a month after i finished taking doxy)to make sure i was cured of lyme. I tested through igenex western blot # 188 & 189. The result came in today.
Do this mean i still have lyme? What is the significan of Band 18? I keep seeing mixed interpretation of band 18...Please help interpretating
Posts: 27 | From NYC | Registered: Jul 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
IGM is positive, so yes, you still have lyme.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I don't have any symptoms thats why i'm confused...should i go back on the meds or not? Could a person be cured from lyme but still show positive on the western blot?
Also, does anyone know what band 18 represent?
Posts: 27 | From NYC | Registered: Jul 2009
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posted
Your Western Blot shows you are positive, but most LLMD's treat until a person is symptom-free. It's a hard call.
I'd read through the symptom list carefully and evaluate whether you have symptoms or not. If you don't, I would really build up the immune system to fight whatever Lyme is left and not causing symptoms. Maybe read Healing Lyme and use some of the herbs recommended in that book?
Band 34 is highly specific for Lyme.
I am not a doctor, that's just what I personally would do.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
would you suggest i got back on doxy for a couple weeks to see if theres a herx or go with herbals? I don't know of any herbals for lyme tho
Also, could lyme have an antibiotic resistance to doxy since i've already taken it for a month?
Posts: 27 | From NYC | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Doxy is never supposed to be the ONLY Rx used. Combination and rotation - with use of liver support and probiotics.
You really need to see a LLMD. Looking back at several earlier posts of yours, there were some links that I hope you were able to read. If not, some of those will be posted below again.
You also posted in "Seeking doctor" for a LLMD. Have you not been able to find one yet?
The treatment you have received is not adequate. A couple weeks more on doxy will not be enough, especially if you have fatigue issues now.
This requires a complex approach for many months, at the least. One researcher says a minimum treatment is 30 weeks - AND did your doctor assess you for coinfections?
I know this is a lot and before it might have seemed too much to take in. You still have a chance to get past this much more quickly than if you were to have had this for a long time.
And, it does not sound like it or he would have already stepped up to the plate, but what is your doctor saying about this? Does he think this is an easy cure with one month only and maybe just another couple of weeks?
If you approach this with eyes wide open, you have a good chance of getting better in months rather than years if it is not adequately treated.
Do you perhaps have a LL ND (naturopathic doctor) near you? There are some who are also ILADS members so they are knowledgeable in all aspects of this. It's very hard to be on your own, so I do hope you find proper medical guidance for a more complete evaluation and treatment options.
I know it's hard to be told you've not gotten good treatment and scary. Please seek out good doctors who really know enough to help you take hold of your health.
This explains WHY you need an LLMD - ILADS-educated doctor and what the terms mean. Most likely your current doctor follows the IDSA approach. All explained here:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - (author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...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..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
-===========
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
Be sure to read the full post - it's very long and a great help.
Excerpt:
. . . "With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years. Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
posted
I've called a few LLMD and none take insurance, i'm currently out of work and can't afford to pay out of pocket. The reason i'm asking to take doxy for a couple weeks is that i feel fine now. I've read the symptom list many times and don't seem to have any. I did feel fatigued for a few weeks after doxy but that eventually went away. Haven't felt fatigued for a month now. The only thing that concerns me is the test results. Does it mean i still have an active infection or does it just show that i HAD and infection but not any longer, is it possible to still be positive IGM and be cured??
Posts: 27 | From NYC | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry, I had to break up the text to be able to read and answer.
------- I've called a few LLMD and none take insurance, i'm currently out of work and can't afford to pay out of pocket.
The reason i'm asking to take doxy for a couple weeks is that i feel fine now. I've read the symptom list many times and don't seem to have any.
I did feel fatigued for a few weeks after doxy but that eventually went away. Haven't felt fatigued for a month now. The only thing that concerns me is the test results.
Does it mean i still have an active infection or does it just show that i HAD and infection but not any longer, is it possible to still be positive IGM and be cured??
(forgetlogic) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be sure to read Dr. C's post about the Western Blot. Read all you can.
You said you feel fine now. Good. I thought you said you had fatigue that was not alleviated with the one month treatment but if you feel good now, GREAT.
Still, there are measures you can take on your own. It is best to have a doctor, of course.
Please go back and read all about lyme. No one can say for certain that you have an active infection but lyme is not easily treated, for sure and you do need to be very cautious.
How do you feel about taking some supplements? Would you be able to follow a very specific protocol?
Do you already follow the self-care guidelines outlined above by Burrascano? That is the first step.
You may be one of the lucky ones for whom a few weeks' treatment seems to be just fine, as long as you are exceedingly careful with your self-care if you are lucky. But, if this is not resolved it could come back much worse. If there is any way you can find a doctor who knows more about lyme, that would be best.
Ask your local support group - they may have a new name for you. And Read all you can. -
[ 11-04-2009, 02:25 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have no problems taking supplements. In fact i've been taking a 13 strain probiotic (35 billion) for a month and took Grapefruit seed extract for 2 weeks .
I took these to fight off any intestinal yeast i may have accumulated while on Doxy. This really helped with the fatigue
I'm still taking the probiotic once a day. And open to take other herbals as well. Not really sure which tho.
Keebler, You said "No one can say for certain that you have an active infection". WHen people ussually go into remission or get cured, do they still test positive with western blot IGM/IGG?
ALso, i keep hearing contradicting views on band 18...some clarification would be greatly appreciated.
THank You
Posts: 27 | From NYC | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
There is some new info out that borrelia may
convert to cyst form where it is protected from
antibiotics by biofilm in as little as 3 days. That being
said, yes you may still have Lyme. It has to be
treated like its sister syphilis which can become
latent. The trick is preventing the biofilm.
-------------------- 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
- Actually, I came back to try to reword that. I deleted it before I saw your reply.
The reason I said: "No one can say for certain that you have an active infection" is that it is NOT as easy as a "Yes, so just take a couple more weeks of doxy" sort of thing, as tied to the question.
Your test is positive, yes. You feel okay now. Great. Can you then assume it's all under control? No. You might be one of the lucky ones (and I so hope so) but, still, the science of the spirochete needs to be considered.
The term "active" would need to be discussed with a LLMD - regarding what stage you might be in and the best path to take right now. A LLMD would be up on the most recent research and methods (see link at the bottom of page).
There is no cure for lyme at this time. There are stages. There is treatment and there is remission. And there are cycles. And some get lucky and have no problems after initial treatment.
Rather than rely on one of us to declare what is best, it is best to have an experienced LLMD evaluate and suggest options regarding active treatment or a watchful eye and specific support measures.
* Were you about to read the entire link for Dr. C's WB explanation?
* Have you been able to read Burrascano's guidelines?
* Have you contacted your local SUPPORT GROUP to see if there are any doctors who take your insurance? Members at the support groups may have names that you won't get here.
The CYST form that Pinelady speaks about is due to only one single drug being given to you when a combination approach is required -- and that is the plan used by most ILADS LLMDs. You have to treat all the forms and stages. And it takes months.
The Grapefruit Seed Extract may have been a good help but two weeks on that would not be long enough. You might want to see what the latest word is on treating cyst forms and biofilm.
Don't give up on finding a LLMD or at least a lyme friendly MD. It might take many calls to find one. There are many more good sources for reading (and action plans) after you've had time with those at the links above so you have a better picture of how to interpret the tests and what the treatment plan entails.
posted
Based on the timeline of your presentation, it is absolutely possible that you have sufficiently treated lyme. Your IgM antibody response unfortunately tells you nothing in terms of whether you are actively infected or not...it only tells you for sure that you were exposed...
Posts: 561 | From mass | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might find these through a library or your local support group. The web sites also offer more information.
Book: Lyme Disease and Rife Machines by Bryan Rosner
================
Editing to add: If you go on to do fine with no more treatment, great. You did not say if you are a man or woman. If a woman, and if you ever plan to get pregnant, it is vital to consult a LLMD before that. Lyme can flair and be passed on through pregnancy. You would want to approach this in the safest of manner for both you and your baby.
If you are a guy, I don't know about sperm affecting a baby but spirochetes have been identified in sperm.
In the meantime, whatever your gender, if you decide to become intimate, be sure to take precautions. The jury is still out but there have been some connections with lyme being spread with intercourse. This is not to scare you, just to help you with informed decisions.
Good luck and be sure to take good care of yourself. -
[ 11-04-2009, 03:22 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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