posted
Hi all I just made a longer, more detailed thread regarding some test results I just received, but I wanted to make another thread to ask some specific questions about the results of my bloodwork in the hopes that some people here might be able to clear some things up regarding my results.
Essentially, I got my bloodwork back, and I tested negative for lyme, but positive for babesia and ehrlichia. My LLD (Dr. G. in NJ), stated that my results show that I DO have these infections-no question about it. She said there are no false positives for these tests, and thus, a positive result definitively indicates that you have these infections. However, when looking at the numbrs Im a bit confused and would love some input.
For babesia my results show IgM 0.80. It lists this number in the "negative column, and indicates that a negative result is anything < 0.89.
My IgG for babesia shows 1.16 It lists this in the "positive" column, and shows that for IgG, anything below 0.89 is negative, between 0.90 and 1.10 is equivocal, and anything above 1.11 is positive. Since by IgG was 1.16, this clearly puts me above the "positive" range.
My question is, since my IgM number was 0.80, which they list as being below the negative range, but my IgG number is 1.16 which is above the positive range, what does this mean?
Dr. G didnt discuss the actual numbers with me, she just said I tested positive for both babesia and ehrlichia, but now when I look at the numbers, it seems that there might be some question. So, given my results, do you guys think that my numbers absolutely indicate that I am positive for Babesia microti?
Now with Ehrlichia Chaffeensis, its a similar situation. For my IGG it simply says: <1:64. It doesnt show me my specific number, it just says its less then 1:64. It the "iterpretation" section of the results, it says I have low/negative IgG.
But for my IgM my number is: 1:80 It then shows that a negative result is anything below 1:20. So my 1:80 is clearly in the positive range. So the final interpretation part of the report says "Equivocal-Due to a low/neg IgG and a positive IgM.
Again, Dr. G simply told me that I tested positive for both babesia and ehrlichia, but according to these tests, there seems to be some question. So, what do you guys think? Do my tests indicate that I have these infections, or is it questionable? Thanks so much-SH
posted
Sorry, just wanted to make sure this was the right forum/sub-forum to ask questions like this regarding co-infections. If not, please feel free to move it where it should go.
Again, Id love to hear from anyone who can help me interpret these results. Dr. G made it sound like there was not even a hint of a question that I am positive for babesia and ehrlichia, but when I look at the actual test results, it seems somewhat borderline.
Posts: 35 | From NJ | Registered: Aug 2009
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WildCondor
Unregistered
posted
I have to ask...why didn't you just ask your doctor these questions? You should ask for an explanation of Igg and Igm, or research this and look it all up, educate yourself. Never leave a doctors office without asking these questions and understanding your results.
Igm is current infection, FYI, and the results show that they are both positive. They are not high postive which is good, but that does not really mean much because the treatment should be the same regardless of what the tests show. MY question is, what will your treatment be? Post the names of the meds and the doses here.
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Doxyclycline 100mg 2X a day Hydroxychloroquine 200mg 2X a day.
I take these concurrently for the 6 week course and then go back for re-testing to see if there is any trace of the infections.
Dr. G told me that babesia is usually totally cleared up with a 6 week course of oral antibiotics, and ehrlichia often is as well, though sometimes it requries additional courses.
I didnt ask the doc about the interpretation of my results b/c she simply stated that I def. tested positive for both of these and there was no question that i had these infection.
However, when I got home and looked at the test results, I saw that there seemed to be some ambiguity. So i am asking people here, who might have experience with this, their opinions regarding the interpretation of my test results.
Thanks-SH
Posts: 35 | From NJ | Registered: Aug 2009
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posted
NO WAY!!! She's treating babesia with 3rd choice drugs! And she thinks it will be cleared up in 6 weeks? That's ridiculous! It will take a minimum of 3 months!
The preferred drugs for babesia is Mepron or Malarone along with azithromycin.
What is she talking about??
She's the former pres of ILADS? Maybe that's why, she's gone way off into her own world. ILADS guidelines are very different than what she'd doing
Posts: 872 | From New York City | Registered: Jun 2008
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losferwrds
Unregistered
posted
The doctor did NOT say it would definately cleared up in 6 weeks, she said alot of cases are ,she will re-evaluate selfhealer in 6 weeks and make adjustments if necessary. Its not like she gave her a 6 week script and sent her home like a GP. Dr G is very methodical, she doesn't lay out a complete protocol and overwelm her patients, she works appointment to appointment and re-evaluates and makes adjustments along the way based on the patients INDIVIDUAL response.
The doctor is still on ILADS board and affliated with columbia as well and up on all the most recent research, she is not some quack, she has been in the game a LONG time.
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posted
Then why is she giving him Hydroxychloroquine instead of Mepron or malarone? And what about this?
quote: Dr. G told me that babesia is usually totally cleared up with a 6 week course of oral antibiotics
That doesn't make ANY sense. Until the RBCs are replaced after 3 months, the babesia lives on. 6 weeks is impossible with any understanding of how babesia works.
And even after 3 months the treatment should go on at least another month.
She is not in accordance with current ILADS guidelines. I have no explanation as to why.
Posts: 872 | From New York City | Registered: Jun 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Some ppl have a parital immunity to babesia. Maybe that is what is going on here and her doctor is treating accordingly.
I think it is important to talk to your doctor about these things. If she is indeed well educated on LD, then she knows what she is doing.
Every single LLMD does not follow Dr B's guidelines to a tee. Many well known LLMD's treat in ways other than exactly following the ILADS guidelines. IMO those are the best docs, because they have done their own research rather than just reading guidelines laid out by someone else and just following along.
I would put my faith in my doctor first and foremost. You have to trust your doctor; and if you don't you should find another one.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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WildCondor
Unregistered
posted
James is right. That treatment plan makes no sense. This is yet another bad Dr. G report, with too low doses. Move on and find a LLMD who knows what they are doing. Just because some MD's belong to ILADS does not mean they are good Lyme doctors.
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posted
just thinking, the doctor might be intending to give some antibiotics and then do some more tests to provoke a positive lyme test.
Thing is, lyme has a double cell wall and hides the outer surface proteins, and consstantly changes them as it has a huge library of dna to pick from, thus fooling the immune system.
By killing some with antibiotics so the immune system gest exposed to the lyme bacterium surface proteins which are otherwise hidden) one can often provoke a positive western blot. Maybe the intent is just to get more testing done.
The aforementioned antibiotics would hopefully do that. One must wait for two weeks after the course in order for the immune system to be able to react and do more testing then.
Please note that the tests are antibody based, meaning it looks for our body's respones to the bacteriae.
If the spirochete hides, there is no response. one must kill some to expose the surface proteins to the immune system, so it can make some antibodies.
And, the sickest patients may be so imune depressed that the antibody response is zero or close to zero.
The coinfections are famous for depressing the immune response, and after treating those coinfections the body is able to show lyme antibodies.
Posts: 366 | From Europe | Registered: Nov 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
selfhealer, if either the IgG or the IgM is positive, then it is considered a positive result.
So, I agree with your doctor. You have babesia and ehrlichia.
If you want to know what IgG and IgM are, here is a short exerpt from Dr. C's Western Blot explanation. He is talking about lyme, but the explanations of IgG and IgM apply to any disease:
"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."
It is my understanding that the tests look for IgG AND IgM antibodies because if you are producing EITHER KIND of antibody, then you obviously have the disease. You would not produce any antibodies of any kind if there were no babesia in your body. Same with ehrlichia.
Also, if a person has babesia and ehrlichia, it seems logical to me that that person also has lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF- Thanks for the response and explanation. It makes perfect sense.
However, one thing that you, and other people have said here, is that since I have babesia and ehrlichia, then I very likely have lyme.
Im not sure I understand the logic behind this thinking.
As I understand it, all of these infections are carried by ticks. Some ticks carry and transmit just lyme, others carry and transmit lyme and babesia, etc etc.
So why is it so hard to imagine that the tick which bit me, only transmitted babesia and ehrlichia to me, and not lyme?
Is there some reason why someone who got babesia and ehrlichia from a tick bite would almost certainly have been infected with lyme as well?
I would be grateful if someone could explain to me why it would be so unlikely for me to have only contracted babesia and ehrlichia, without having contracted lyme.
Thanks-SH
Posts: 35 | From NJ | Registered: Aug 2009
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If it helps, I was living in Washington DC at the time I first began experiencing these symptoms (8 years ago).
I had been doing a ton of mountain biking in Rock Creek Park (right outside of DC) and was often riding and walking through dense brush and grasses.
I was doing this mountain bike riding at Rock Creek in September and early Oct, and got sick in mid October- so certainly the timeline makes sense (if you assume i was bitten by a tick at Rock Creek Park in Sept. or early Oct. and then got sick mid Oct).
Dr G told me that ehrlichia is found in the mid-atlantic states (DC falls into this category), and therefore it does make sense that I could have been infected with ehrlichia and babesia by a tick in DC.
Im not sure how common Lyme is in the DC area, but according to Dr. G, both babesia and ehrlichia are found in that area of the country, so it does make sense that I tested positive for those infections.
Lastly, I am faily certain that Dr G's plan is to treat me with the 2 antibiotics I mentioned (doxy and hydroxychloroquinine) in order to treat the babesia and ehrlichia.
But ALSO I think she plans on re-testing me for lyme after my 6-week course of antibiotics, to see if i test positive for lyme due to the antibiotics partially killing the lyme and thus making them more likely to appear on a lyme test.
Does this make sense?-SH
Posts: 35 | From NJ | Registered: Aug 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I would agree that you most likely do have these infections. I know that sometimes you can have antibodies to an infection and it can mean it was a past infection. We thought that could be possible with my 3 year old daughter's bart titer, with was IGG 1:260. However, after treatment with a bart drug (bactrim), her titer went down 3 months later.
Our very experienced LLMD (DR. J in CT) told me that this meant is was an active infection. Also, she has NEVER tested positive for lyme, but I asked Dr. J if the positive bart test meant that she definitely had Lyme and he said yes.
I agree with James and Wildcondor that 6 weeks is most likely NOT enough to get rid of babesia. Also, the drug Dr. G prescribed is not considered one of the top 2 therapies. I, frankly, have not heard of anyone taking this alone to treat babs.
For Dr. G to state that babs "ususally" clears up within 6 weeks is ludicrous. I can say this from personal experience: My twin 5 year old boys have been treating babs for almost a year, and when we stop the meds, the symptoms come roaring back. My husband also has not been able to shake it.
By the way, My husband went to Dr. G and we wasted about 4 months with her. She does not follow ILADS guidelines and does not treat aggressively enough. She does not make clinical diagnoses and failed to diagnose or treat my husband's bartonella, which was obvious to me. (He later tested positive for it.)
With regard to having Lyme, it is my understanding that in almost all cases you will have it if you have coinfections. I am not sure, but I think this is because your body with a strong immune system would normally be able to fight off the bart or babs on its own and you would get well. However, when your immune system gets compromised from Lyme, then these othter infections are able to take hold and cause damage that your body can no longer stop.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, self, it sounds like you got your lyme in my neck of the woods. I am familiar with Rock Creek Park.
After years of sending folks in Maryland to lyme doctors, I can tell you that they all have at least lyme, babesiosis, and bartonella.
Although it is THEORETICALLY possible to have only babesia and ehrlichia, in reality that is not what the doctors see. What they see is that people with lyme coinfections also have lyme disease.
Burrascano's lyme treatment guidelines say that 30 to 50% of people with lyme disease will test negative for lyme disease.
So, where you see the coinfections, you see lyme disease whether the tests show it or not.
I was told by my lyme doc that these diseases help one another remain in the body. So, again, if you have some of the coinfections, you will have lyme disease. Lyme seems to be the one that "holds the door open" to the others. My doc likened it to AIDS in that respect. It suppresses your immune system (see bottom of p. 3 of Burrascano for reference on this) so that you become susceptible to all the other illnesses that are about that your body would normally just fight off.
Also, I have to agree that the current regimen of choice for babesiosis is atovaquone (Mepron, Malarone) plus an erythromycin-type drug (zithromax, biaxin, or ketek). See that on p. 24 of Burrascano document. It is the first sentence at the top of the page.
Awww... here's the quote so you can read it right here:
"...the current regimen of choice for Babesiosis is the combination of atovaquone (Mepron, Malarone), 750 mg bid, plus an erythromycin-type drug, such as azithromycin (Zithromax), clarithromycin (Biaxin), or telithromycin (Ketek) in standard doses. This combination was initially studied in animals, and then applied to Humans with good success. Fewer than 5% of patients have to halt treatment due to side effects, and the success rate is clearly better than that of clindamycin plus quinine.
The duration of treatment with atovaquone combinations for Babesiosis varies depending on the degree of infection, duration of illness before diagnosis, the health and immune status of the patient, and whether the patient is co-infected with Borrelia burgdorferi. Typically, a three-week course is prescribed for acute cases, while chronic, longstanding infections with significant morbidity and co-infection will require a minimum of four months of therapy. Relapses have occurred, and retreatment is occasionally needed."
So, if you got these diseases 8 years ago, you are looking at a longstanding infection requiring a minimum of 4-5 months of therapy. (I have heard from others that Burrascano is now saying 5 months of therapy rather than the 4 shown in his 2008 Guidelines.)
I had lyme, babesiosis, and bartonella (the lyme positive through LabCorp and the b's positive through Igenex). I went to a Burrascano type doctor and got rid of my diseases. Before him, I went to other lyme doctors and had no success.
It has been 4 1/2 years since I completed my treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
The doc is the key to getting rid of this disease, my friend. The doc is the key. I have sent many of my friends and acquaintances to Burrascano docs in my area and they also got rid of their diseases. So, I have seen this protocol work over and over.
I had lyme undiagnosed for about 10 years, just to let you know that you CAN get rid of this disease from hell.
When you call a lyme doc's office to make an appt, ask if the doc follows Burrascano. If the answer is "No," I suggest you find another doc. Also, many docs SAY they follow Burrascano, but they really don't. So, you have to read and study the Guidelines for yourself and evaluate the doc's treatment of you against the guidelines.
I learned this the hard way. So, I hang around LymeNet to help people get to the best doctors quicker and not have to waste so many years in treatment like I did.
Burrascano is the recognized lyme guru in the U.S. and the world. He wrote his Guidelines to teach other doctors how to treat lyme disease. They are used in other countries. They are the only doctor's lyme treatment guidelines you will find on the ILADS website. That says a lot, I think.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
OK- just a quick response to the many people here who have strongly suggested that because I tested positive for babesia and ehrlichia-that I almost certainly have lyme as well (despite my negative lyme tests).
I just thought Id list my test result numbers for my lyme tests, as perhaps that might help to provide a clearer picture (perhaps not).
So as I said, I tested positive for babesia and ehrlichia, but my results for lyme were:
Lyme Disease Western Blot (IgM/IgG)-no bands present for either.
Lyme Disease C6 Peptide by Elisa- Neg (0.08) It lists anything below 0.90 as negative. Im obviously WAYYY below that.
So given the fact that there was NO indication of lyme in either of the tests, do you guys still think that I likely have lyme due to the fact that I tested positive for the 2 co-infections?-SH
Posts: 35 | From NJ | Registered: Aug 2009
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posted
I repeat: those tests you list, are antibody tests, and the co-infections you are positive for, suppress your antibody response. Also, lyme has a double cell wall and does not show its surface proteins to your immune system, so your immune system cannot mount any antibody response to lyme, so both the elisa test and wb are negative.
It is typical for such patients start getting positive lyme antibody serology after a course of antibiotics.
And, you have co-infections that typically lower immune function anyway, and make any antibodies to lyme lower.
The wb tests do not report any weak bands, even though they are there. Only strong bands are reported. The sicker you are, the weaker the bands, the less positive are your tests.
You must read those antibody based tests backwards and rather look at your symptoms.
Just take a course of antibiotics and see if your tests start turning positive, in my humble opinion.
only PCR tests actually test for the lyme bacterium. The other tests test for your body's immune response. And live lyme has a double cell wall and does not reveal its dna to your immune system, for that one has to kill some.
Posts: 366 | From Europe | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Yes, Lyme is a pro at hiding from the immune system - that is why tests are so difficult.
If you have two other tick-borne infections, it would be nearly impossible not to also have lyme. Perhaps, though, you ask?
I would not bet my life on it as since you will be treating 2 tick infections, treating 3 would not be that much of a stretch. I'd put my money on getting on with treatment. Hopefully, you have an excellent LLMD to guide your decisions and treatment.
====
P.S. It is also important to know that there are over 300 strains of borrelia. In the U.S., we only test for one, typically. Sometimes, STARI is assessed, but few doctors even know about that strain.
And even within one single strain like lyme, it can morph and change. It has a unique method of evasion. -
[ 09-27-2009, 01:57 PM: Message edited by: Keebler ]
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