posted
My initial IgeneX Lyme tests came back: IgM Western Blot: Neg (41 kDa+ and 34KDa IND). IgG Western Blot: Neg (41 kDa++, 39 kDa IND, and 23-25 kDA IND. Since I couldn't get in with a Lyme specialist right away, my internist consulted with one, who said he was 97% positive based on symptoms and my tests that I have Lyme's. He recommended going on Doxy for several weeks (200mg/day), then going off it for 2 weeks, and re-test. He said he was sure the tests would be positive then. The Lyme specialist is on vacation in Europe, and I am supposed to re-test. Do you have to do both the IgG and the IgM over, or just one or the other? Insurance isn't covering these tests, but I would do them both again if needed. I have heard that some people's tests never come back positive, but all the symptoms are there and have been for many years. Would appreciate any info. Thanks!
-------------------- THE PRESENT (author unknown): **Yesterday is history. Tomorrow is a mystery. Today is God's gift...that is why we call it the Present.** Posts: 13 | From Twin Cities | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- kitteagirl,
Some people will be along soon to offer insight. So that more can read your post, I'm breaking up the text. Many here have trouble reading unless the paragraphs are very short: -----------
kitteagirl's post:
My initial IgeneX Lyme tests came back:
IgM Western Blot: Neg (41 kDa+ and 34KDa IND).
IgG Western Blot: Neg (41 kDa++, 39 kDa IND, and 23-25 kDA IND.
Since I couldn't get in with a Lyme specialist right away, my internist consulted with one, who said he was 97% positive based on symptoms and my tests that I have Lyme's.
He recommended going on Doxy for several weeks (200mg/day), then going off it for 2 weeks, and re-test. He said he was sure the tests would be positive then.
The Lyme specialist is on vacation in Europe, and I am supposed to re-test. Do you have to do both the IgG and the IgM over, or just one or the other? Insurance isn't covering these tests, but I would do them both again if needed.
I have heard that some people's tests never come back positive, but all the symptoms are there and have been for many years. Would appreciate any info.
Thanks! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- THE PRESENT (author unknown): **Yesterday is history. Tomorrow is a mystery. Today is God's gift...that is why we call it the Present.** Posts: 13 | From Twin Cities | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme should be a clinical diagnosis. Tests are not the end-all, be-all and you may not need repeat tests.
According to many LLMDs, 200 mg doxy is not enough.
(Edited to add this in light of Lemon's good thought in the post after this: As a starting dose for a short time, 200 mg might be used to get you used to it and avoid a herx, but I meant to say that, if you were to have lyme, it is not enough to effectively treat lyme in the long-run. You would want to know what your treating doctor would have in mind for the future.)
However, Doxy is not the only drug used. A combination is required. See links below for two sets of treatment guidelines from ILADS and Burrascano. Still, a good LLMD may alter the guidelines due to your individual needs while keeping in mind what will work.
---
Igenex is the best lab. Others don't do all the bands. read their site & call them before further testing. Timing is everything.
You should be tested for other tick-borne disease (TBD), too.
Be sure any specialist is an ILADS-educated or ILADS-member LLMD. Most ID (Infectious Disease) doctors go by the IDSA guidelines which ignores the best research and significantly undertreats.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
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:
" . . .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.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely 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:
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.
"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."
-
[ 09-26-2009, 04:32 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Find your local SUPPORT GROUP for help in finding a doctor, etc.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- sorry for so many - I try to think of what can help you hone in on all to consider - and I'm a bit fragmented. Good luck. ------------
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
Something you should ask your internist/lyme doc is, why do you need a positive Igenex to be diagnosed?
If 97% sure already, wouldn't it seem prudent to treat regardless of what the Igenex comes back as?
I tested positive on the Igenex WB, but after taking it (and paying for it), I really wondered why I bothered, as my lyme doc was going to treat regardless. There was already enough evidence without the WB.
If not tested for co-infections already, that's what they should test for. And you can try normal labs for those too (although even co-infection testing can be unreliable). But at least health insurance will pay for it.
And 200mg Doxy is an acceptable starting dose for the first month or so. I expect your doctor will increase the dose later on.
Posts: 584 | From NY | Registered: Feb 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
kitteagirl~ Your lyme tests are not anywhere near positive. You only have one band positive (band 41). Pretty much everyone tests positive for that band. Other problems (including other infections) can cause the same symptoms as lyme.
First (I'm assuming you've done this) have a thorough work up by your PCP. Include B12 deficiency, Vit D testing, celiac testing, thyroid function tests and CBC, UA, CMET. If all of that comes back normal, then look at other pathogens such as HHV-6, EBV, enterovirus, Cpn.
Do a search using my member number and the words "viral testing" and you'll get more info.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Keebler
Honored Contributor (25K+ posts)
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posted
- Also, be sure that since you have been taking doxy that you are taking a good probiotic to offset possible candida from the abx (antibiotic). I hope your doctor mentioned that.
- Have you been taking a good multi-vitamin? Extra magnesium can help relieve many symptoms, as can fish oil. These are suggested by most LLMDs. In fact, a deficiency in D3, or in magnesium or calcium can cause many intense symptoms, too.
You can read more about supplements in Singleton's book or as part of Burransano's guidelines, this section:
"The differential diagnosis of Lyme disease requires consideration of both infectious and noninfectious etiologies. Among noninfectious causes are thyroid disease, degenerative arthritis, metabolic disorders (vitamin B12 deficiency, diabetes), heavy metal toxicity, vasculitis, and primary psychiatric disorders."
"Infectious causes can mimic certain aspects of the typical multisystem illness seen in chronic Lyme disease. These include viral syndromes, such as parvovirus B19 or West Nile virus infection, and bacterial mimics, such as relapsing fever, syphilis, leptospirosis, and mycoplasma."
posted
Thanks for all your input. All my problems started about 20 years ago after a tic bite. I was living in an area then where Lyme's was very prevalent. The screen I had at that time came back negative. I've been tested for everything over the years. My IgeneX test results did go to a certified Lyme's specialist (by fax), and my internist consulted with him. He said he was 97% certain that I have Lyme's based on the test results and the clinical symptoms. He seemed to think that my re-tests would come back positive after a round of doxycycline. I was just wondering if I needed the IgG and IgM both. I guess I probably should. Thanks.
-------------------- THE PRESENT (author unknown): **Yesterday is history. Tomorrow is a mystery. Today is God's gift...that is why we call it the Present.** Posts: 13 | From Twin Cities | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- kitteagirl,
When you say "certified lyme specialist" - do you mean one who is an ILADS member LLMD? There is really no certification for lyme specialty, but their professional affiliation (IDSA or ILADS?) usually explains how much they've studied in this area.
--
Well, it says a lot that all your problems "started about 20 years ago after a tick bite"
Do you remember a bulls eye rash with that (and any photos) ?
If you had the classic rash, you would not need testing for lyme, as but could put that money toward tests other tick-borne infections. Believe me, these are ever so much as important as lyme. If a co-infection exists and is not specifically treated, lyme will be much harder to address.
Co-infections are very common with lyme. You should be able to wait until after you see a LLMD so that the doctor could best guide you in that part.
Do you already have an appointment set up for after the doctor returns from Europe?
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler -- Thanks for all your help. Yes, the Lyme physician I will be working with was recommended by the Lyme Disease referral site. (The one that lets you do three searches per month). That physician is not currently taking new patients, but I am on his waiting list, so he is just consulting with other physicians meanwhile. He told my internist that often the Lyme bacteria will hide in the blood cells after so long a time and come out after treatment begins, which is why he wanted the re-test. I did not have a bulls-eye rash, but I was having a lot of weird rashes about that time. I remember seeing a dermatologist, and he had no idea what they were from. I guess I'll get checked for those co-infections also as you suggested. My physician really wanted me to see an infectious disease doctor, but I insisted on a Lyme doctor, because I have already seen an infections disease doctor who came up with nothing (but that was probably 18 years ago). Also, the Lyme doctor told my doctor that as far as he was concerned, an IND on the Western Blot was the same as a positive. Thanks again for your help!
-------------------- THE PRESENT (author unknown): **Yesterday is history. Tomorrow is a mystery. Today is God's gift...that is why we call it the Present.** Posts: 13 | From Twin Cities | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hate to keep on this, but the Lyme Diseases referral site sometimes has IDSA doctors on it. I am not sure how this happens, but it has.
Normally, I would say to call and be certain that your doctor is a member of ILADS - or at least has read research from ILADS doctors/authors. However, given that lyme doctor's knowledge of your past tick bite and symptoms and what he said about how he would consider an IND to be positive (with that bite) . . . he may be on board.
Good for you in knowing that a regular ID doctor would not have the knowledge necessary (although, once in a while one will).
Sorry you have to be on the waiting list. Hopefully, this will all work out. You might contact your local support group for suggestions for a GP that is LL.
Hope you can get the other tests and get on the train to getting better. It is possible, even after years, so keep up the determination.
- The next time you post, would you please break up your text. It is very hard to read without eyeballs popping out all over the place.
thanks. Again, good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
kitte,
i would definitely read Dr. B's guidelines. (print for future reference)
As you can see, most folks with lyme are treated based on their symptoms and not test results. You dont really need to spend money to re-test.
If anything, I would request tests for coinfections, which are organisms that travel along with the lyme bacteria. Most folks may have at least one type of coinfection.
What really concerns me is that he may not be a qualified Lyme Literate doctor even tho you found him via the lyme help site.
You really do need to be treating much more than a few weeks to totally end up in remission.
Lyme and coinfections cannot be irradicated quickly because of its reproductive cycle. My treatment was very short and it lasted 9 months on abx.
So, with that I would do a search under 'seeking a doctor' in your area and request references too. it may mean the difference of you being under treated and well treated.
If you are on doxy you need to absolutely stay out of the sun or you can get seriously burned without turning red. Do not take with milk products and NEVER lie down within 1/2 hour of taking it.
Its very harsh and best to take with or near food to avoid stomach irritation. Do read the product info and drink LOTS of water.
Also, as keebler mentioned, you should immediately pick up some high culture high strain probiotics, such as:
Megaflora by Megafoods, contains 20 billion live cultures and 15 strains. Renew Life Ultimate Flora CRITICAL CARE has 50 billion cultures and 10 strains.
These are carried in most health food stores. The most important thing to remember is refrigerated live cultures and high culture / high strain count.
NSI 15-35 has 15 strains and 35 billion live cultures.
take them 2 hours away from all supplements and abx, and one preferably at bedtime. Minimum 3 x a day is good as the antibiotic is killing off good gut flora every day along with the bad.
extra probiotics is not harmful--you NEED them during and after treatment. replenish often!
if you dont keep up good flora, you most likely get stomach distress and/or yeast (candida) and yeast infections.
good luck and keep us posted. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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