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» LymeNet Flash » Questions and Discussion » Medical Questions » Conflicted about lyme

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Author Topic: Conflicted about lyme
Maia_Azure
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Hello all,

I've been reading posts here for awhile. I recently got diagnosed with babesia and clinically with lyme. I also found out I have two intestinal parasites ( harmless, probably from foreign travel). My babesia titer is high, but my antibody test for lyme is negative as well as the basic CDC western blot.

I've started with oral meds, but now I'm wondering if maybe I don't have lyme.! I hit almost every symptom, and so far 2,weeks in no herx. I felt maybe a mild increase in my vertigo and some light sensitivity, but that's in. Like usual, I feel better on antibiotics, not worse.

I did have an untreated bulls eye rash about 8 years ago ( got the spider bite excuse). I'm just very nervous I'm barking up the wrong tree because I want to have figured it all out.

I have an lllmd, but have other doctors who don't accept the diagnosis. To them it's just stress/depression/adult ADD. My joint problems were just 'weak' joints, from overuse or injury., etc.

I think I'm afraid of undergoing a significant financial burden, with no positive test or obvious herx. But I'm even more afraid of not getting the correct treatment without these indicators and being dropped by my lllmd. For not responding well.

I guess I'm just afraid it really is depression. I see a psychiatrists but she is ambivalent, thinking each could be equally likely, though I get the feeling she is leaning towards severe depression with PTSD from some life events.

When my antibody test and western blot was negative, I had just really hoped for an obvious herx, now I just don't know if I can justify the expensive treatments.

.................................................

Breaking up the text for easier reading for many here -

[ 08-06-2014, 12:54 AM: Message edited by: Robin123 ]

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

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Lymetoo
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I will try to respond to this later... For now I'm moving it to Medical so you can get some help.

Truly a medical question! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

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lpkayak
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If you had a bullseye you were infected with lyme

Some ppl can fight it off...but you still have many sx that sound like lyme

You say you have an llmd. Did they do igenex test? That would help

I live in nh too...i will pm you. There are two llmd psychiatrists who have written a lot about sx like depression

--------------------
Lyme? Its complicated. Educate yourself.

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Judie
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I just feel better and better on antibiotics. Not everyone has a "noticeable" herx.

Count yourself as a lucky one.

Herx just indicates something is there and your body is having trouble detoxifying.

Maybe your body is a great detoxifier.

My body isn't great, but I do a ton of detoxifying.

The only time I think I may have had a herx, it wasn't as bad as PMS (symptoms flare at PMS).

My med allergies have been way worse than anything I'd consider a herx.

Also, you might feel a herx when you're on a different combo of meds.

Here's some info:

I found this website helpful when I was new to Lyme:

5-reasons why you may not be herxing
http://www.tiredoflyme.com/5-reasons-why-you-may-not-be-herxing.html#.U-GX7vldXw8

Another article:
http://kimmiecakeskickslyme.wordpress.com/2013/09/16/the-herx-reaction/

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GretaM
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Aside from the odd week to ten days of herxing here and there, my experience was the same as Judie's...just gradually started to feel better in baby steps.

Bulls eye is lyme. Period. Even the illiterate docs who believe one has better odds of winning the lottery than catching lyme, would treat a bullseye. (inadequetely, lol, but still would treat).

With babesia, lyme, and two intestinal parasites...your immune system sounds like it won't have much energy left to produce enough antibodies for the Elisa.

You may find after a while, when you retest, it is positive, as your body will get a little pep back with further treatment.

That's what happened with me.

Also, glad you have an LLMD as your symptoms scream lyme to me, a non medical layperson.

Glad you're treating babesia. It causes a lot of adhd, depression, sleep issues.

You may find these issues disapear as you treat.

It is hard at first to accept a lyme dx. It took me a while too. When I started feeling better, and has physical changes from treatment, it cemented it for me.

Then a later positive test sealed it.

I didn't herx till rifampin and zith for bartonella. And then about 8 months into IV, and once when I took too much of a herbal tincture.

Otherwise it was slow and steady.

I remember being dissapointed I wasn't herxing in the beginning too. Then I had one and realized I hated the herx. Haha.

Hang in there. Symptom free days are just around the corner.
[group hug]

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Robin123
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Tests don't always come back positive - see the 27 reasons for a negative test result even if we're actually positive - I posted it in Medical a couple days ago.

I felt amazingly better on oral clindamycin for about a month, and then I herxed. So maybe 2 weeks is a little early to tell? In the beginning, all my pain went away, and stayed away throughout taking the antibiotics.

One of Lyme's symptoms is depression, as it affects brain chemistry. And a bull's eye rash is a bull's eye rash - I'm with the other responders here, that you have it.

You can take this time to learn more about what the organisms do and how to combat them.

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poppy
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If you are going to have a herx, and not everyone does on every antibiotic, it is more likely to hit 3 to 4 weeks into treatment.

Having babesia by itself is possible, but more often lyme accompanies it. Babesia is immunosuppressive, and might be causing lack of antibodies to lyme. Just one of the possible reasons for a negative lyme test. You are lucky to be getting treatment, so stick with it.

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DanP
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I had more than 20 years of annual negative tests from a NYC area lab....it was only 10 years ago that Stony Brook gave me a positive result and igenex an equivocal result...treatment helped me feel better...i'm sure i got it as a child growing up in Maine as one of my sisters and one of my brothers are also plagued with Lyme...but I haven't lived there since 1976....i probably got reinfected on one of my trips or here on Fire Island...

just saying the tests are unreliable, treatment is relatively harmless to try if expensive perhaps, but if you start to feel better, that's the ticket!

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Keebler
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-
Babesia can be a powerful force and, since it's probably ALWAYS not present without lyme . . .

Be careful about "being conflicted about lyme" -- that you do not allow conflict of emotions to lead to ignoring facts. Two entirely different matters.

Recognize the stages of denial & fear so they don't pull you down. It takes courage to face our fears but it's easier than letting them crush us.

And it's normal and quite okay to experience and express conflicting emotions about ramifications, just not about reality.

We cannot be conflicted about truth or facts. Is really is what it is.

I have so much I'd like to say in response to your post but just can't now. If you listen to those who are not lyme literate tell you it's "depression, etc." or this or that, it could be a huge mistake.

I did that for years. Yes, I was depressed but it was BECAUSE of borrelia infection in my brain and body primarily.

Bulls eye rash IS the positive test and so many - yes, SO many - of your symptoms are also key elements of lyme. And Babesia which also requires combination / rotation / advanced treatment by a LLMD.

The tests mean nothing when negative. Nothing. They cannot always reveal the truth. Education can, though, and seeking a proper assessment and plan options with an ILADS educated (and beyond) LLMD.

Is really is what it is. Work with the truth, not against it. Conflict of emotions may then turn to determination in your favor.
-

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Lymetoo
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AMEN, Keebler!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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-
http://www.anapsid.org/lyme/lymeseroneg.html

27 Reasons for False Negative (Seronegative) Test Results in Lyme Disease


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.

See the test explanations here.


http://publichealthalert.org/uploads/2013_6.pdf

Public Health Alert (PHA) is a newspaper committed to researching and investigating Lyme Disease and other chronic illnesses

Laboratory Tests and Diagnosis for Lyme Disease and Co-infections - June 2013

- by Armin Schwarzbach, M.D., Ph.D. - Five Pages


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What is a LLMD? LL ND? What is ILADS?

You say you have a LLMD but it's confusing what you hear from other doctors. The detail here may help shed light on what makes the difference in a LLMD and why that matters so much.

WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.

Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
-

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Keebler
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-
You say that, regarding depression, you:

" . . . see a psychiatrists but she is ambivalent, thinking each could be equally likely, though I get the feeling she is leaning towards severe depression with PTSD from some life events. . .. " (end quote)

Well, after having gone to many psychologists and a couple psychiatrists over the years (thank goodness that was long ago) . . . they were NOT lyme literate.

They did me zero - absolutely zero good. In fact, their ignorance harmed me in many ways by wrong diagnoses, wrong medications on top of other wrong medications.

The issues that interweave with babesia and lyme means that you MUST have someone who is LL to guide your treatment path (whether talk therapy or, &/or medications.

And the "think happy thoughts and you will be happy" just doesn't work with infections in the brain and full body illness. Sure, finding beauty and humor and hope matters but

I've seen too many counselors who though sheer willpower of happy thought should work alone. It will not. And it forces us to turn away logical and natural emotions of fear and depression that are absolutely warranted by the circumstances.

They also need to be a near expert in nutrition because that's also so important with symptoms of depression, and more so for those with lyme.

To start with nutrition, those with lyme are very often sensitive to gluten. A gluten free diet lifted depression for me within the first week.

Certain B vitamins, magnesium, Fish Oil . . . all these are also key to support for the brain / mood.

Adrenal support is also "required" for anyone with any degree of depression with lyme. The kinds of adrenal stress / damage that lyme can cause results in depression. There is no way it cannot.
-

[ 08-06-2014, 03:02 PM: Message edited by: Keebler ]

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Keebler
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-
http://www.thehumansideoflyme.net/

The Human Side of Lyme

- explores the neuro-psychiatric and neuro-psychological ramifications.
-

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Judie
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The psychological effects of Lyme disease
http://www.igenex.com/psychological_effects.htm

It's hard to say where the psychiatrist is coming from without knowing the details of the ambivalence.

The psychiatrist could be reflecting back the patient's ambivalent emotions. Some psychiatrist try not to offer opinions, so they can let the patient decide things.

Other psychiatrist act like the authority. Don't mistake good intentions for facts and knowledge.

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Catgirl
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The correct diagnosis for lyme is a clinical one (symptoms). The blood test just confirms it, SOMETIMES (several reasons for this).

Bullseye = lyme. You've got it regardless of how/why you don't herx. Not everyone herxes, and this can change in time. It's different for everyone.

It's still good if you don't herx, and good if you do. We are all different. I wouldn't hunt for an evidence based test, just treat as your LLMD advises. Your other docs are clueless about lyme.

With lyme comes co infections, even parasites. Most people usually have at least babesia, bart and lyme at best (minimum). Depression can be bartonella (doesn't always turn up on a blood test) or from parasites (your regular docs won't know this), or even as a form of herxing.

You're in the right place. Follow your gut and hang in there!

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Maia_Azure
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I think I am most worried as the Bull's Eye was about 9 years ago (assuming that was my first time being infected..). I was given a week of antibiotics, but when the test was negative I was told further treatment unnecessary and given the "it was probably a spider or other insect bite" excuse. I was a bit concerned at the time as it was a classic presentation of a bull's eye that took up half of the side of my torso...but back then who was I to argue with a negative antibody test?


Since then I have taken 3 months of doxcy for unrelated treatment..so I just never believed it possible to STILL have lyme. Each year I would get another vague symptom and the fatigue would worsen. Ive requested to be tested for Lyme about 4 times in the past few years, not once was I offered anything but the standard anti-body test that has always been negative.

In my heart I really truly believe I have Lyme. I have over 20 symptoms that match, and they have been getting worse. But every once in awhile my doubt comes back. It happens after I go to one of my checkups for the many specialists I have. I've started bringing a family member in with me as I cannot argue with them anymore and I forgot what I am going to say anyway.

I know it sounds completely silly, but I was just waiting for a herx to cement this diagnosis for me. I'm pretty sure my LLMD won't go the IV route unless he can be sure. But I've suffered so long I'm afraid I won't get proper treatment. Perhaps this is just my anxiety as the newly diagnosed.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

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poppy
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Understandable that you want reassurance. Most people think testing for everything medical is more accurate than it really is.

Yes, it is pretty useless and very stressful to have to keep arguing with uneducated specialists about lyme. Most of us gave that up and only discuss it with lyme docs and each other. When necessary to see a specialist about something else not lyme related, we just don't talk about it. Or even lyme related. Usually it is better to only see those people when a lyme doc requests that you do so for a specific reason.

And especially do not mention your lyme doc's name to these ignorant specialists.

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GretaM
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Maia-what you are feeling and needing a friend during your appointments is totally OK and very much normal. Most of us on here have needed help during appts, especially in the early days.

Doxycycline alone does not kill much spirochetes. About 20%. Of the vulnerable ones.

That leaves 80% of the spirochetes to do something they always do in presence of doxycycline-turn into round bodies.

The round bodies float around until the doxy is stopped, then they slowly unfurl, (or whatever the little devils do, change their proteins etc), and turn into active spirochetes.

So doxy alone does sweet f all.

This has been demonstrated time and time again in mice and also labs.

Borellia are smart devils and adapt quickly to their environment to ensure their survival.

So glad you are seeing an LLMD. Experienced docs will try antibiotic combo after combo to find the right one for each patient.

Everyone is different also, as different coinfections cause difficult treatment issues.

I even read once that borellia uses DNA from other kinds of bacteria to help hide from the immune system... Awful.

I really want to congratulate you for keepin' on and not giving up and listening to your instincts.

Anxiety is normal-both from the bacteria in our bodies and also just from having an illness that has been so political in the past.

Also sometimes treatment causes a bit of anxiety. Maybe the anxiety is a tiny herx?

Many hugs for you, and sending morale support thru the web to you.
[group hug]

Keebler your last few posts on this thread were phenomenol!
Really excellent!

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SickSci
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Hey Maia -

I'm in a kinda similar boat, but my llmd believes for now I do not have Borrelia. A couple things I don't think have been said in this thread:

+ Babesia / other protozoa can cause the neuropsychiatric symptoms you describe. What has your tx for Babs been?

+ I personally think non-Borrelia Lyme-like symptoms are common and question the model that Borrelia is the center of the multi-pathogen complex universe. You might have something else.

+ If your detox organs are strong and your dosages appropriate, you may not herx.

+ I agree with Greta - often times vague anxiety is the only 'herx' I feel after certain medications.

+ Especially if you were happy-go-lucky before getting systemmically ill, there is probably a medical causes of your neuropsych symptoms. Psychiatry is only recently starting to change its paradigm and actually studying the organ it treats.

Feel better! > [Smile]

--------------------
-------------
- Working Dx: Protozoa x3, Bartonella
- Tx: Biaxin, Mycobutin, Ivermectin, boluoke, serapeptase, allimed, silver ACS 200 spray, Mg, Iodoral, fish oil, Vit's B, C, D, NAC, etc

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Keebler
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-
Good point about other considerations. In the "diagnosis" thread, there are other infections / conditions that any good LLMD will consider.

Still, proof positive of lyme: (from a previous thread) " . . . untreated bulls eye rash 8 years ago . . . ." [and listing of so many symptoms since that match lyme]
-

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Maia_Azure
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I do have Babesia. In I think 2000, I had a flu-like illness that kept me in bed for 7 days. I assumed it was the flu but was never tested. After that I never recovered..and developed iron deficiency anemia and vertigo that is still present. I also had several bouts of pretty severe depression. Just this past 3 years my anti-depressants stopped working. Its really been hard because my other doctors use that as proof that it is depression.

Doctor:Are you depressed?
me: Yes.
Doctor: See, that's your problem

or

Me: Ive tried therapy, increasing my meds, nothing works. I don't want to live like this anymore

Doctor: See, that's depression. Are you suicidal? If you treated this depression better you would feel better.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

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Maia_Azure
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The good news for me is all my other co-infections tested were negative. Its just the babesia (confirmed by stonybrook) and clinical diagnosis of lyme. I do have an intestinal parasite.

And I've started having elevated levels of epstein barr antibodies again, as well as Mycoplasma pneumoniae. Its clear my immune system is under stress.

On the one hand, a past bull's eye makes me sure I have had lyme.and def didn't get proper treatment. But I also fear that there is something else going on and I will never know, or possibly I will never conclusively be diagnosed with lyme besides clinically..so it will be just this big giant question mark.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

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Keebler
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-
Maia,

I'm sorry that you face such questions.

I know you are not comfortable trusting others who have studied lyme for years, lived through years of the kinds of uncertainly as you do . . .

yet as you can become better educated about lyme, it will become much clearer. I state this with absolute certainty, based not just on my own case but that of so many others, what I've read, studied and pondered:

Lyme is most certainly, absolutely, without a doubt a major component here. It's not a matter of you "had" it but that you still "have" it, now.

Until you can see a true expert in this very complex infection, an ILADS educated (and beyond) LLMD, or LL ND

or educate yourself as much as possible as to what you can do for yourself (if a LLMD or LL ND is just not possible) . . .

then all the other doctors you discuss in your other threads are never going to be able to solve the issues. I know this because of personal experience. And the experiences of others.

If you need help learning the truth about lyme, there are many authors / researchers / patients / former patients who can offer valuable insight and save you much time.

If you need help figuring out "how else" to approach this, others have had to approach it that way, too. Still, if there is ANY WAY WHATSOEVER, that you can consult with a proper LLMD, very soon . . . this would be the very best action you can take for your life.

Education is the key for so much in life. And, now, more than ever. Find those who are properly educated, experienced and equipped to treat you, or at least advise you on the next step.

Lyme is key. It's never alone, though -- indeed, there are always other infections & considerations -- but lyme simply cannot be ignored and brushed aside because we just don't want to face it or we don't want to believe in its existence. It won't let you. Not for long.

And if it's fear that holds you back, consider that the fear is not of the truth but of your worst fears, themselves, outcomes that will actually probably come true without proper consultation.

Truth, when faced, may pose complications galore but there are ways to work through all those. Truth is freeing in many ways. It's not always easy, but the options become clearer and positive outcomes possible.
-

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Maia_Azure
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I do see an expert for Lyme who is ILADS educated. Ive been sick for 14 years now at least, so it's hard to believe this is really it. Past doctors really instilled in me this idea that I had a weakened immune system, either environmentally induced (possible virus exposure) or a combination of genetic factors and environment (cumulative exposure). I am heterozygous for an MTHFR Mutation.

I am starting a cephalosporin antibiotic in addition to Zithromax. Zithromax alone hasn't helped my brain fog or joint pain (now its in my hips and I am only in my mid 30s!). So maybe the addition of a new class of antibiotics will coax the lyme out!

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

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lymie_in_md
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Maia -- what is your doctor doing about biofilm in your protocol. If you don't know ask him/her what it is they are doing.

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Bob

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beaches
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Which two parasites do you have?
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Maia_Azure
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I believe it was Iodamoeba buetschlii and Endolimax nana. Both considered harmless. Ive done quite a bit of traveling in central and south america, so it's not surprising even though I was always careful!

For my protocol I am on Byron White formulas, and for antibiotics I have a Macrolide (zithromax)and am starting a Cephalosporin. Then I am retesting my titer for the babesia and taking the western blot from igenx (my test from stonybrook is unequivocal.

I am only in the first month of treatment so no biofilm treatment yet. I think my doc is looking to see if i will herx on my treatment protocool before moving to higher powerered drugs. I feel completely the same on the zithromax, possible more joint pain but thats it.

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Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
   

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