posted
Im a bit hesitant to post this because I know it will lead to a whole host of additional opinions, and Ive already been given SO many differing and conflicting opinions from doctors, as well as the lyme community here. But I really am lost so perhaps u guys can help.
Ive made a few other posts but will briefly sum up my situation.
I suddenly became quite ill 8 years ago at age 21. Terrible fatigue, felt "stoned" all the time, dizzy, and overall just WEIRD.
I had a million workups (including some lyme tests but not from a lld) and all came up negative.
So for the past 8 years, my symptoms have waxed and wained but never gone away. At my best, Im fatigued and "stoned" feeling but able to get through the day.
At my worst, I am in bed for 2 weeks and can barely keep my eyes open (no pain though).
Anyhow, 3 weeks ago I decided to go to a LLD, because I thought it was possible I had lyme that had not been properly tested.
So I tested positive for ehrlichia and babesia but negative for lyme.
Now MOST people here have asserted that since i tested positive for ehrlichia and babesia, then i almost certainly have lyme regardless of what the test said.
Anyhow, my lld had put me on a 6 week course of 2 different oral antibiotics to treat the co-infections. I am 3 weeks into that treatment.
She is also going to retest me for lyme after the 6 week ABX to see if lyme shows up since apparently a negative lyme test will often turn positive after a course of ABX.
Anyhow, after getting my positive dx for the co-infections i was SO hopeful that these awful symptoms ive had for 8 years were due to the co-infections, and wanted more then anything to find that by treating the co-infections with ABX, my health would return.
But I am now 3 weeks into the ABX course and feeling worse then ever. I know that herx reaction might be the culprit, but then again its possible that Im just going through one of my "bad phases" with my illness and it has nothing to do with the ABX or herx.
Anyhow Im just so confused about everything. I dont understand why so many ppl suggest that since i have co-infections, that i almost def, have lyme.
I dont understand why its not possible that I simply got bitten by a tick (or 2) that carried only babesia/ehrlichia, and not lyme. Why is it so hard to think that I might have the co-infections without lyme.
Secondly, Im really confused about the timeline for my illness. As I said, I first got sick 8 years ago, and after I recently tested positive for the co-infections, I thought it was reasonable and likely to think that I picked up these co-infections 8 years ago and they have caused my symptoms.
But, I recently learned that I was tested at 2 different times (a month after I became ill, and then 4 years ago) for lyme AND the co-infections and I tested negative.
So, according to those tests, since I tested neg as late as 4 years ago, but tested positive this month, it would mean that I got these co-infections sometime AFTER my tests 4 years ago.
If this is true, it would mean that I got sick with something else 8 years ago, and then sometime in the last few years I became infected with babesia and ehrlichia.
That just doesnt make sense to me. To accept that 8 years ago I got sick with something that they couldnt diagnose, and then just so happen to pick up 2 rare infections years later which therefore could not be responsible for my symptoms??
Also to complicate matters, for ehrlichia, I tested positive for IGM but neg for IGG and for babesia I had positive for IGG but neg for IGM.
As I understand, the accepted interpretation of those results suggest that I have a recent ehrlichia infection, but was infected with babesia longer ago.
This too makes ZERO sense when I think about it. I somehow picked up two different rare co-infections are two different times??? That just doesnt add up.
To to sum up how my test results would be interpreted in relation to my illness:
I became ill 8 years ago with some undiagnosed illness. Then, sometimes in the last 4 years (since my co-infection tests were neg 4 years ago), I picked up babesia. Then, sometime in the last few months, I picked up ehrlichia.....and thus neither of these co-infections are responsible for my symptoms.
Does this seem as illogical and far fetched to u guys as it does to me.
Can anyhow help to illuminate all these contradictions for me. Thanks-SH
Posts: 35 | From NJ | Registered: Aug 2009
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posted
This is just a thought but maybe you had Lyme disease 8 years ago and are just recently infected with the co-infections.
Were you tested for viruses like Epstein Barr, HHV-6, CMV, mycoplasma? Those viruses can make you real sick too. Epstein Barr is known to cause CFS if your immune system is already low.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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posted
You keep coming on here looking for a clear cut answer and explanation.
There is none! Nothing about lyme or it's coinfections is cut and dry and it can all be very confusing and difficult to figure out.
I know others and myself have commented on some of your other threads, stating that testing is inaccurate and that you most likely have lyme as well as the coinfections.
Maybe you have lyme, maybe you don't. Most likely, you do.
I think someone on here explained to you in another post that lyme is good at hiding, therefore good at not showing up on blood tests. Also mentioned was that if a tick carries coinfections, the odds that it also carries lyme are very high as lyme is more commonly found in them than coinfections.
I think you just need to accept that there isn't always a clear cut answer and not all of us can solve every bit of our lyme mysteries, especially right off the bat.
After you've come to that realization and acceptance, then you just need to move forward and take it a day at a time. Many times if you are patient, the answers, which are often not there initially, will present themselves.
I also think you've got to accept the fact that you are probably in this for the long haul and that you many need to find another llmd who will treat you longer term.
Six weeks to erradicate these coinfections(and possibly lyme) seems very unlikely to me, especially since you seem to have had them for quite some time now.
We're all just kind of winging it, selfhealer. None of us are exactly alike in how our diseases present themselves, therefore, not all of our treatment plans are alike.
It's good that you found this site and have begun treatment. Now just keep on keeping on, reading, learning, being patient, taking each day at a time, asking questions, and things will eventually fall into place and become much clearer to you.
Also, know that you are not alone in your confusion as to which way to turn. I think we've all been there.
[ 10-15-2009, 07:30 AM: Message edited by: Topaz ]
Posts: 423 | From Upstate NY | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- selfhealer,
You wrote: " . . . now 3 weeks into the ABX course . . ."
What is your course to be? How long? With a combination of medicines intended to treat the ehrlichia and babesia and ALL the forms and cycles of borrelia (since you likely do have that).
You salso aid: " . . . 3 weeks ago I decided to go to a LLD . . ." ==
Is this doctor a member of ILADS? Or, at least ILADS "educated" meaning, knowledgeable about both the ILADS diagnostic and treatment guidelines as those of Burrascano?
Has this doctor read Singleton's book, Alan MacDonald's research and also has a familiarity with all the other authors of ILADS?
Can this doctor tell you who authored the article explaining why at least 30 weeks of treatment is necessary for lyme treatment?
Does this doctor understand all about the support measures?
I hope so. I'm not trying to grill or test you here, really. This is just far too important to settle for someone who may not have the best education base in the area of tick-borne infections (TBD).
Now, all that said, your doctor may be wonderful. Personally, I don't see why you need another test for lyme.
You have a better chance of winning the lotto every week for year than NOT having lyme if you have ehrlichia and babesia.
You can never be sure, so to save your life, it's far better to treat it along with the other TBDs. Chances are it will be a very wise move. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- About that test for lyme, assuming it was IgM and IgG Western Blot, did you have ANY positive bands?
A negative test by CDC criteria does not rule out lyme.
And, surely, your test was not an ELISA, I hope. Those are very poor tests. -------
Good luck with all this. I hope your find your grove. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- With specifics needed to complete a reply, I found the answer to a few questions in some of your previous threads:
Topic: JUST GOT MY RESULTS!!! (posted by selfhealer)
posted 24 September, 2009
I actually tested negative for lyme. Not a single positive band.
For Babesia Microti, my numbers were IgM-0.80 IgG-1.16
For ehrlichia chaffeensis IGM-1:80
---------------
. . . [doctor] has given me a 6 week oral course of both Dorxy (doxycycline), and hydroxychloroquine. She stated that both ehrlicia and babesia respond very very well to antibiotics and that IV antibiotics are not used for these infections since generally a 6 week course of oral antiobiotics are very effective at wiping these infections out.
. . .
selfhealer writes:
Yes, my doc said that babesia and ehrlichia are fairly ease to treat.
She has be on doxycycline at 100mg 2X a day, and
hydroxychloroquine at 200mg 2X a day.
These are both for a 6 week treatment.
==========
WildCondor:
Very poor choices and those are NOT the right doses. Doxy for Ehrlichia should be double that dose. Just because a doctor is involved with ILADS does NOT make them a good LLMD.
Clearly, [your doctor] is not following the treatment guidelines properly. In 10 years on here I have never heard anything positive about her as a LLMD at all. In my opinion, time to move on, bring your test results to a LLMD who knows what they are doing.
============
selfhealer replies:
The fact is that [my doctor] . . . its very hard for me to believe posts from people telling me she has no clue what she's doing.
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.
(selfhealer) ---------
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What Lab was used for the lyme Western Blots?
====================
I also send a loud echo to WildCondor's previous post from another thread:
quote: "Very poor choices and those are NOT the right doses. Doxy for Ehrlichia should be double that dose. Just because a doctor is involved with ILADS does NOT make them a good LLMD.
Clearly, [your doctor] is not following the treatment guidelines properly. In 10 years on here I have never heard anything positive about her as a LLMD at all. In my opinion, time to move on, bring your test results to a LLMD who knows what they are doing." end quote
(WildCondor) =========== ===========
Babesia protozoa REQUIRES combination treatment of two anti-protozoa agents, similar to those used for malaria treatment.
Babesia treatment can take a long time, certainly longer than 6 weeks. Nothing about any tick-borne infection is easy to treat as your doctor says. Nothing.
Sorry. I don't mean to depress you but as someone who has not one LLMD in my state, you have some choices. While not every LLMD goes by the same guidelines and each patient presents with the need for an individualized plan, from all I've studied for years, the protocol you have will not be effective.
I would hate to see anyone else struggle with this longer than necessary. Again, I hope you find what you need to be sure you are on the right path.
Be sure to read the ILADS site, www.ilads.org - check out the two sets of guidelines there.
Did you get the babesia book by Schaller that someone else recommended? It's important to read up on that. His books are a bit pricey, so if you can't afford it, see if the lyme support group can loan you a copy.
Education is key. Knowledge is power - and that is what will give you your life back. But also, be sure to take some quiet time and forget all this (for an hour or a day or two) and let your inner voice guide you a bit. -
[ 10-15-2009, 07:14 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hi all I appreciate all the replies. I havent been able to check this forum for a bit and I just now read the replies to my thread here.
I am sincerely grateful for all the responses here, and apologize if Ive come off stubborn or difficult.
I think Im just extremely confused and frustrated by all of this. I was SO elated when I received a positive blood test (for ehrlichia and babesia) after being ill for over 8 years and having every test in the world suggest I was in perfect health.
When I got my positive dx, I was just so relieved to get an answer which very well could account for all my symptoms, and was unspeakably hopeful that treatment of these infections would restore my health and life. Im sure many of you can relate.
However, Im now learning how unsure and nebulous this whole class of infections can be.
It seems that essentially everything about my illness contradicts the test results.
Im especially baffled by my ehrlichia test results which showed a strong IGM reaction and no IGG reaction-suggesting that ehrlichia is a recent infection for me.
Am I supposed to believe that I was bit and infected by 2 different ticks? One tick got me a long time ago and infected me with babs and then in the last few months I was infected with ehrlichia? That just seems so far fetched.
But the alternative is that what the test results suggest, is not an accurate depiction of the timeline of my illness. But, from all I know about infections and antibodies, chronic infections cause the release of IGG antibodies.
Now I know its possible for a chronic infection to also produce IGM antibodies (when the infection reproduces your immune system can interpret it as a new infection and re-launch an attack, thus releasing IGM antibodies).
However, its my understanding that any chronic infection should present with IGG antibodies. There is no reason Im aware of for why a chronic infection would NOT reveal IGG antibodies.
The result of all of this deductive logic Im attempting is that Im left with 2 scenarios, neither of which make the slightest bit of sense. I honestly cant say which of these 2 unlikely scenarios makes more sense.
Anyhow, to answer a few of the questions you guys posed:
My tests were done by Igenex (I believe thats the lab of choice for these infections right?)
My lyme test showed NO positive bands.
My LLD is Dr. G in NJ and Im equally confused about her.
There has been alot of criticism of her here when I posted that she was my doc. This criticism is confusing to me because EVERYTHING ive read about her suggests that she is one of the experts on lyme and co-infections.
Also, I know for a fact that she was the co-founder and former President of ILADS- that is not up for debate. Its hard for me to believe she "doesnt know what shes doing" as many here have suggested, considering she was the former president and co-founder of the group that is the authority on this disease.
As for an update on how Im feeling:
Ive now been on doxy and hydroxychloroquine for 3 weeks of a 6 week course. In general, I feel a good deal worse then before I started with the ABX.
On many days I am so fatigued I can barely get out of bed, and I also have this odd sensation like I am rocking on a boat.
I realize (and hope) that these symptoms are due to herxing. I will have my follow up appointment with Dr, G in 3 weeks and she will retest me for my co-infections and also retest me for lyme to see if the ABX cause a positive lyme test.
I will admit that I too am very confused about her choice of treatment for babesia (hydroxychloroquine). From my research as well as talking to other docs, this is far from the best treatment for babs.
What confuses me is that she obviously knows what the standard protocol is for babesia treatment, so why she would choose this 3rd or 4th tier treatment is baffling.
One last thing. In my first post in this thread I talked about my confusion and disappointment upon learning that I WAS tested for all the co-infections about 4 years ago and was negative for all. This upset me because it suggests (but doesnt prove) that I got my infections sometime after this test, which would mean these infections arent responsible for my illness.
Well, I ended up making an appointment with the doc that did these tests to get some more information. It turns out the doc that did these tests is a LLD. It is Dr. De S. in NJ. I was wondering if anyone knows anything about him and what the consensus is regarding him. Am I better of having him treat me then Dr. G?
Well thank you all so much for the support and advice. Be well-SH
Posts: 35 | From NJ | Registered: Aug 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
If it is not Lyme, then Mycoplasma of one strain or another could be the next most likely pathogen involved. This is simply going by probability.
Tetracycline or another antibiotic known to kill cell wall deficient bacteria could be used to see if it clears you up.
A test would be a good idea, but tests can lead to false conclusions, as they are almost never 100% accurate. I always assume that a test can only confirm an infection, not rule it out. I don't care what test it is.
I use MMS to kill unknown pathogens, but it does not work on all of them. I do not think it is capable of killing Babesia. It does work on enough of them to make it worth a try.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would also add that since you have been on
treatment you have gotten a lot worse. That would
be proof for me that you do have something most
likely intercellular and possibly yeast also for
which you need to take something to prevent. My
daughter has just been on treatment for one week
and spotty at that. She has just started menses
again after just one week off and last nite her
chills set in, extremely cold, she felt like ice,
had to get in the bed, and told me she felt like
her throat was closing up when she drank or ate.
I told her it was the bugs we were beginning to
fight. But I was scared it was something else.
Possibly a reaction to the meds. Then I sat there
and remembered my initial symptoms when first
starting treatment and since she is my daughter I
assume she is going to feel the things I did to
some degree. So if you are worse I would continue
to treat. But you may have to back off a bit. Especially when you feel feverish ill, even if your temp is not high.
-------------------- 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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