hi everybody, I am a new member here and have been truly touched by the many stories here from those who have had to deal with the struggles and frustartions of these terrible infections.
I made my first post here a few weeks ago in which I described the history of my illness and symptoms, and stated that I had tested negative for lyme by my clueless PCP, but had not yet seen a LLD, but was scheduled to see one soon. Well...I had my appointment with Dr. G in NJ, and just got my results yesterday...so here goes.
I actually tested negative for lyme. Not a single positive band. She felt certain that I did not have lyme. BUT- I tested absolutely positive for both babesiosis and ehrlichiosis. I am honestly a bit overwhelmed at this point. If you read my first post, you will see that I have been ill for 8 years and have had every test done on me in the world...and up until now, I never had a positive diagnosis.
And yesterday, I walk into Dr. G's office, and she casually informs me that I tested absolutely positive for both babesiosis and ehrlichiosis. The whole thing felt so surreal. After searching for so long, and having essentially given up hope of ever finding an answer, I am in a state of disbelief that SOMEONE FINALLY FOUND SOMETHING.
Now, I am trying my best to stay calm and not be too optimistic. I am aware that its possible that while I do have these 2 infections, they might not be what is causing my symptoms. I understand its possible that there is something totally unrelated which has caused my symptoms these past 8 years, and I may have just picked up these 2 infections a year ago and might be asymptomatic. However...its just very hard to contain myself since for the first time, I had a test come back positive, and according to Dr. G, these infections could very well cause the symptoms I've had for 8 years. Anyway, I now have a few questions.
1-Is it strange or rare that someone would pick up 2 of these co-infections, but not have picked up lyme? (bear in mind, when I became sick, it was late summer/early fall, I was in Washington DC, and had been doing a ton of mountain biking in the woods of Rock Creek Park).
2-Dr. G 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.
My question is-do you guys agree with the antibiotic course she had chosen to treat these 2 infections? Id esp. like to hear from people who have/had babesia and ehrilchia, and what kind of results they got from their antibiotic treatments.
3-Id like to hear some opinions regarding my bloodwork to see what you guys think of my numbers (I basically want to see if you guys think that my numbers for ehrlichia and babesia ABSOLUTELY suggest that I have these infections). For Babesia Microti, my numbers were IgM-0.80 IgG-1.16 For ehrlichia chaffeensis IGM-1:80
4-Lastly, for anyone interested. I am going to copy paste the first part from my first post on this forum, where I give the history of my illness and the symptoms. I am hoping someone can give their opinion as to whether or not a babesia and ehrlichia infection are possibly/likely capable of causing my symptoms for such a long time (8 years). Thank you guys so much and be well.--SH
Hello all, Im very happy to have found this community. I have just a few questions that I thought might be answered by some of the wonderful members here. Before I pose these questions, I will provide a very brief background of my illness, as it is pertinent to to my questions.
First off, let me say that I have NOT been diagnosed with Lyme (however I have not yet seen a Lyme literate doc). I have had several basic lyme tests over the years (I believe Western Blot), and the results were "mostly negative". Im not an expert on lyme tests, however, from what I recall, the doctor told me that there were a few "bands" that might be indicative of possible lyme exposure, but overall, she interpreted the test as being negative for lyme. As a precaution, she put me on a month of oral antibiotics (I understand this is not sufficient for a chronic lyme infection)-this was about 4 years ago.
Now, the reason these lyme tests were performed, is that I have suffered from several chronic conditions for almost 9 years now. Im a 30 year old male, and one day, at age 21, I awoke feeling terrible. I will now BRIEFLY describe what my symptoms have been, because I do feel they are pertinent to the questions I will ask. So starting suddenly at age 21 (9 years ago), I found myself INCREDIBLY exhausted. I awoke feeling as though I had not slept at all. In addition, and actually more troubling, was that I was experiencing a very new sensation which I have seen described as "brain fog".
My "brain fog" however, seems somewhat different from what I normally see it defined as. I do not suffer from memory loss, inability to concentrate, cognitive problems, etc. Instead, my "brain fog" is a sensation of almost feeling "drunk" or "stoned". In a very real way, I feel like I have altered conciousness or perception, similar to the effects that a drug or alcohol might produce. I feel almost in a "dream state".
It is essentially these 2 symptoms (profound fatigue and brain fog) that I have suffered with, at varying degrees of intensity, for the past 9 years. I do NOT have any physical pain or fevers or any of the more "concrete" symptoms often associated with lyme-I just have fatigue and "brain fog" that has lasted for 9 years.
[ 09-24-2009, 05:10 PM: Message edited by: selfhealer ]
Posted by sutherngrl (Member # 16270) on :
Just because no bands showed up for lyme it doesn't mean you don't have it. The test for Lyme Disease is not very accurate, therefore LD should be a clinical diagnosis.
Also I doubt you would have co-infections and not have LD.
Posted by selfhealer (Member # 22115) on :
quote:Originally posted by sutherngrl: Just because no bands showed up for lyme it doesn't mean you don't have it. The test for Lyme Disease is not very accurate, therefore LD should be a clinical diagnosis.
Also I doubt you would have co-infections and not have LD.
Hmmm, interesting. It looks like she performed a Lyme disease western blot (IgM/IgG), and also a Lyme disease C6 Peptide by Elisa. They both came up negative. From all I've read about Dr G in NJ, she is VERY knowledgeable and respected, and she seem to feel that lyme was unlikely and since I got positive results for babesia and ehrlichia, we should treat those first and see if my symptoms dissapear. If after my course of antibiotics, my symptoms persist, then we might start looking deeper into lyme. Im not doubting you, but are you sure that its very rare for someone to have co-infections like babesia and ehrlichia, without also having lyme?
Posted by Elaine G (Member # 20735) on :
You probably will see the Lyme bands appear on
future testing once you are treating the co-
infections.
My LLMD has seen this repeatedly in his practice.
Posted by Elaine G (Member # 20735) on :
Selfhealer
Sounds like my symptoms for the past 12 years.
Brain fog and fatigue. You can also add balance
problems as my other symptom.
Finally diagnosed 3 months ago. Now on treatment.
Posted by groovy2 (Member # 6304) on :
Yes its possible to have Babs and Ehrlichiosis only-- Its is not likely tho--
Future tests May show up positive after taking ABX for awhile--
Lyme test are Very Inaccurate and I would not put much faith in its results- Especially since you have been sick for so long- --Jay--
Posted by selfhealer (Member # 22115) on :
quote:Originally posted by Elaine G: Selfhealer
Sounds like my symptoms for the past 12 years.
Brain fog and fatigue. You can also add balance
problems as my other symptom.
Finally diagnosed 3 months ago. Now on treatment.
Hmmm interesting. So sometimes even after you initially test negative for lyme, once you start treating co-infections, your lyme result becomes positive?
Also Elaine, did you test positive for any co-infections like I have? If so, which ones, and what treatment are you taking, how long have u been taking it, and how has it been working?
Posted by TerryK (Member # 8552) on :
Babesia is not easy to get rid of for some of us. I'm on my second round of treatment. First round lasted 6 months. I relapsed shortly after going off the meds. That's not at all unusual from everything I've seen here at lymenet.
As others have said, a negative lyme test is not unusual in chronic lyme patients.
If you aren't currently seeing an ILADS LLMD, I'd strongly suggest that you find one. They are very well versed in clinical diagnosis and in treating the infections that you have.
You can try to treat them with your current doctor but in all liklihood, her treatment will not be adequate.
Terry I'm not a doctor
Posted by selfhealer (Member # 22115) on :
Also, I wanted to add one more thing about ehrlichia specifically, which I was diagnosed with. From the research I've done, it states that the prevelance of ehrlichia in humans is 0.7 cases per million!- meaning less then 1 person in a million has it. I read another report which stated there are only about 300 or so cases of ehrlichia in the USA per year- that number is consistent with the first study I read about it being 0.7 per million. How can this be possible??? If there are only 300 or so cases per year, then I would literally be one of the only people in the USA who has it, and yet I sense that there are MANY on this forum alone who have ehrlichia. So whats going on here.
Posted by selfhealer (Member # 22115) on :
quote:Originally posted by TerryK: Babesia is not easy to get rid of for some of us. I'm on my second round of treatment. First round lasted 6 months. I relapsed shortly after going off the meds. That's not at all unusual from everything I've seen here at lymenet.
As others have said, a negative lyme test is not unusual in chronic lyme patients.
If you aren't currently seeing an ILADS LLMD, I'd strongly suggest that you find one. They are very well versed in clinical diagnosis and in treating the infections that you have.
You can try to treat them with your current doctor but in all liklihood, her treatment will not be adequate.
Terry I'm not a doctor
I think you may have mis-read my post Terry. I am currently seeing Dr. G in NJ who is a VERY LLD. She is the one who just gave me my positive babesia and ehrlichia results yesterday. She is the co-founder and former president of the medical association for Lyme
Posted by selfhealer (Member # 22115) on :
Also wanted to add one more thing. I made another thread where I posted my test results for babesia and ehrlichia. Id love it if some of you who may be well versed in these tests, could follow this link and take a look at my results and help me to interpret them. Thanks
please edit your many posts here by clicking on pencil, 3rd box to right of your name in each of your posts, and break up your LONG paragraphs into short paragraphs for us severely neuro lyme folks who can't comprehend or read as is.
double space between each paragraph too; that white space is so important to us ok.
also, you don't need to use the quotes to reply to folks, just type in their name and post your comments.
this was included in my welcome letter to you here .....
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
Posted by Hoosiers51 (Member # 15759) on :
What lab did the Western Blot? I think you should retest for Lyme in awhile, or when your antibiotics are stopped, through Igenex and possibly Stony Brook.
Erlichia seems to be rarer than babesia or even maybe bartonella (hard to know with Bart because many people test neg for it). Most people here do not have erlichia, from what I can tell. But there definitely are people with erlichia, they just seem to be the minority.
Doxy treats erlichia. It also treats Lyme though. 6 weeks may not be enough to treat Lyme, that's why I'd encourage you to get retested to be sure it isn't in the picture. Or you could just continue treating on the assumption you have Lyme, if you can find a doctor that would do that. (you would be able to, I'm sure....it might not be covered by insurance though). But be mindful that you could not have Lyme....or you could. Just weigh your options with how you feel the abx are working.
Babesia could take longer than 6 weeks. Sometimes Mepron or Malarone (one or the other with Zithromax or Biaxin) works best for babesia sufferers. Sometimes the infection gets handled by the immune system though.
I'm not familiar with the symptoms of Erlichia, but babesia could be to blame for the fatigue and brain fog you experience. So I would consider Malarone or Mepron if that regimen does not get you better.
Best of luck and congrats on getting positives!
Posted by selfhealer (Member # 22115) on :
Betty-I made the changes you requested. Is this sufficient, or do I still need to shorten up the paragraphs.
I aplogize for the trouble. If I need to alter the post further please let me know.
HOOSIER- to answer your question. Igenex did my lab work.
I was prescribed doxy for ehrlichia and hydrocychloroquine for babesia.
After 6 weeks of this regimen, I go back to the doc and have bloodwork done to see if the infections are wiped out.
I also assume she will retest me for lyme at this point.
So does anyone else here have ehrlichia?
And, is it really that rare to have babesia and ehrlichia without having lyme?
Posted by lightparfait (Member # 22022) on :
I live a few miles from Dr. G's office, and those in NJ who understand lyme do not go to her. She treats the arthritis type symptoms.
Just because a Dr.is written up as being an expert, or was a past pres. of ILADS does not make them a good LLMD. I have seen most of the NJ/NY so-called experts...and find they do not have cured patients!
There are better, more obscure, LLMD's in NJ! Go where those who are lyme free have gotten better! Ask Dr. G. to put you in touch with all her cured patients. The only cures she has seen are those who were treated immediately with the bulles eye rash or imbeded tick.
6 weeks of doxy will not get rid of your ehrlichiosis and babs. Also, she does not test for RMSF. At least she didn't last year...and all my neighbors have RMSF!!!!
Also, most LLMD's will not tell you how to detox and work on heavy metals, parasites, candida, leaky gut etc...the things that help you heal and enable your immune system to work on lyme remision naturally.
Posted by TerryK (Member # 8552) on :
self - So you are saying that she is a co-founder and past president of ILADS??
You wrote: I actually tested negative for lyme. Not a single positive band. She felt certain that I did not have lyme. BUT- I tested absolutely positive for both babesiosis and ehrlichiosis.
Wow, hard to believe that an ILADS doctor would say they were absolutely certain that you don't have lyme based solely on a negative test especially in light of the fact that you tested positive for babesiosis and erlichiosis. That in itself is highly suspicious for lyme.
It is not unusual for very sick patients to have lyme but be seronegative. Some have shown up with the DNA in their blood and yet are seronegative via WB testing.
Terry
Posted by sutherngrl (Member # 16270) on :
I originally tested negative on the ELISA and then no bands on WB, before treatment. After a few months of treatment band 41 IGM showed up, then after over a year of treatment band 23 IGM showed up.
This is not uncommon at all. You need to find a LLMD that understands this!
Posted by WildCondor (Member # 434) on :
Lyme not showing up on your tests means absolutely nothing. The testing is all horribly inaccurate so fixating on Lyme tests is worthless. The babesia and ehrlichia are very treatable and you should feel relieved that protocols are in place to treat you! Maker sure you take the right doses for long enough. Treatment for babesia and Ehrlichia also treats Lyme (if done properly). You can never be too optimistic either. FYI -Lightparfait is right on the money with the advice.
Posted by selfhealer (Member # 22115) on :
TERRYK
First off, I think is mispoke a bit.
She did not state that she was certain I didnt have lyme. She said that the tests she performed showed no evidence of lyme, but I did have positive results for babesia and ehrlichia.
She therefore thought the best plan was to treat these 2 infections, come back after the treatment and do more blood tests to see if the infections are gone and see how i feel.
Obviously if after 6 weeks my blood shows no infections and I feel 100% better, its pretty safe to say the these co-infections were the culprit.
In terms of her being past president of ILADS, I have read this several times about her. Here is a quote i copy/pasted from the lymediseaseassociation.org website:
"LDA president Pat Smith invited Andrea G (removed last name to protect doctor), MD, President, International Lyme & Associated Disease Society, ILADS"
It certainly seems like she did have this title...do you have reason to doubt this?
[ 09-25-2009, 04:10 PM: Message edited by: selfhealer ]
Posted by selfhealer (Member # 22115) on :
WildCondor:
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.
Do you thing this is a good course of treatment for my infections?
Posted by selfhealer (Member # 22115) on :
Also, again. I would TRULY appreciate if anyone here can help me interpret my test results for babesia and ehrlichia which I posted at this thread.
I read somewhere that unless you had a blood transfusion then the odds of having Lyme if you have Babesia are something like 90%.
Generally I suggest conservative doses of meds -- but in my opinion the odds of curing babesia with only doxy and plaquenil are pretty close to zero -- please read the Dr B guidelines. Babs needs a minimum of 4 -6 months treatment and the preferred meds are NOT the ones you have been prescribed.
You were very lucky to get positive tests for Babesia and Ehrlichia -- but without adequate treatment you are in for a long extended illness in my opinion.
Go ahead and take the meds you have been prescribed but starting looking for a real LLMD -- one who follows Dr B guidelines.
Bea Seibert
Posted by selfhealer (Member # 22115) on :
Seibert...
God- I find all of this so confusing. Here I am thinking that I AM going to a great LLD. Ive read amazing reviews about her and she's the F&*$%ing co-founder and former president of the International Lyme & Associated Disease Society.
I naturally assumed that I was seeing someone who was a leader in this field.
It just seems there are so many opposing positions and opinions regarding lyme and treatment and who is a "real LLD".
Im not really doubting what you are saying, but its hard to sort through what is opinion and what is fact. Is Dr G really just a hack who has no clue what she's doing?
She assured me that bebesia is very responsive to antibiotics and that in her experience a 6 week course of oral doxy/hydroxchloroquine usually knocks out the infection.
But then I come on here and people assert that she couldnt be more wrong, and that Im getting the wrong meds, and that theres no way my infections could clear up in 6 weeks.
I just dont know how to sort thru everything and figure out what is fact and what is opinion.
Posted by WildCondor (Member # 434) on :
quote:Originally posted by selfhealer: WildCondor:
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.
Do you thing this is a good course of treatment for my infections?
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, Dr. G 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.
Posted by gemofnj (Member # 15551) on :
self,
so glad you finally got some positive tests results and your symptoms arent 'imaginary." alot of us can relate to that.
sorry you are so frustrated, but most llmd's would probably include lyme treatment because most chronically ill patients dont have positive tests results. in the lyme world, rule of thumb is, 'better to treat than not.'
i mean think about this, you probably got your E and B from a tick going biking. it seems highly unlikely that these tick born diseases were transmitted by the tick and it wasnt carrying borrellia as well. (multiple pathogens)
if you have the time, just do a little more researching and reading. you may come to understand why they are making those opinions. Posted by Pinelady (Member # 18524) on :
I agree it-if you have had it a long time it may be
very difficult to treat. If they had told you that
I would feel more confident in seeing them. Since
they didn't I would look elsewhere.
Posted by losferwrds (Member # 19741) on :
Dr G is the former president of ILADs, she has tons of patients and has seen it all. I used to go to her but switched to a doc closer to south jersey she was a 2hr drive and I had to take a day off of work to see her,
She absolutely knows whats she's doing, and almost fell out of chair laughing at some of the info I brought in from this board, trust the doctor, no one on this board is a llmd.
Posted by selfhealer (Member # 22115) on :
losferwrds-
I am tending to agree with your comments. I appreciate the input of everyone here, and I am certainly not dismissing it.
I will bring up the points everyone has made here.
But, truth be told, I have to consider the fact that this IS just a public board where anyone can say anything!
The fact is that Dr G is absolutely the co-founder and former president of ILADS- its very hard for me to believe posts from people telling me she has no clue what she's doing.
I honestly do appreciate all the comments and opinions and thank you all for the help.
I just dont see how you reconcile the notion that she has no clue how to treat or diagnose, with the fact that she has been such a respected and prominent figure in this field-SH
Posted by Lymetoo (Member # 743) on :
I think she is at least a good start. Go with her until you find that you are not getting well.
In light of things that were said here, I would edit out her NAME!!!
and it IS against Lymenet rules to post our LLMD's names. We want to protect them.
Posted by TerryK (Member # 8552) on :
self -
As pointed out, we are not doctors. We can only tell you what we know based on our own experience, research, what we've been told, what we've seen here over the years etc. etc...
There is a book called "The Diagnosis and Treatment of Babesia". It is written by an LLMD. It will give you the common treatments that are used, recommended length of treatment and why (due to the life cycle of the red blood cell) etc. etc..
Go to medline and look through the studies like many of us here have done. Spend some time researching on your own. Then consider that the picture may change when you have multiple pathogens, especially if those pathogens have a profound effect on the immune system.
You asked for our opinion, we told you. Please don't get upset that our opinions don't necessarily agree with your doctor. If you want another doctors opionion, consider reading the book I mentioned or go to another LLMD for their opinion. If you want other patients opinion (which may not jive with your doctor's and/or may not be correct), then come here and ask, knowing that you must be the one to sort through it all and decide what to do.
There is no "one size fits all" for TBI's. It's unfortunate but that's the way it is. It is up to YOU to decide how to proceed.
I live on the West Coast. I did not know who you were talking about when you used your doctor's last initial. You will need to remove her last name from your post since it is against the rules to use the full name.
Terry I'm not a doctor
Posted by TerryK (Member # 8552) on :
You may find it more helpful to get information about your treatment by searching the ILADS site.
Enter these in google, each line would be a separate search.
For some reason, for babesia, ILADS site search is returning just a few links that don't work. I've notified them so they can fix it.
Best of luck to you, Terry I'm not a doctor
Posted by sutherngrl (Member # 16270) on :
I commented on your other thread, but will say it here.
IMO, the best LLMD's are those that have done their own lyme research and treat accordingly, rather than just following along with some other doctors guidelines.
This is a good support site and very informative and helpful; but trust in your doctor!
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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