Confused? Don't Know What to Do? // INPUT

All test results posted below.

I have been on acticlate for two months and rifampin and malarone for one month. These drugs were prescribed by my LLMD. My question is that I'm confused on what the best route is to take regarding treatment.

I saw my physician today and he believes that chronic lyme and chronic morbidities exist. However, he was honest in saying that Lyme Disease was not his expertise and that he thinks I should get a second opinion by either an Infection Disease Doctor who treats Lyme Disease or another Lyme literate medical doctor. He was concerned about how long I was prescribed to take these drugs, especially when administrated together. He also did not think I had the clinical symptoms of Lyme Disease and wanted me to see a rheumatologist.

He is a very nice doctor who is easy to talk to but I'm unsure on what to do. Should I continue my antibiotic protocol or should I stop and get a second opinion. He said that if I did have Lyme Encephalopathy an IDSA doctor would administer IV antibiotics such as Rocephin. I'm a little weary now all of the sudden. Should I be on IV antibiotics. My doctor thinks that if I do indeed have Lyme in chronic form, which I tried telling him countless times that ID doctors do not believe chronic Lyme exists they would administer IV antibiotics. This disease is so confusing because my doctor told me that 10 days of doxycycline for acute Lyme Disease would eradicate it! Is this true? If so then I merely have an autoimmune response causing these symptoms and not Lyme Disease.

I WANT TO MAKE IT CLEAR that I knew when I got the tick bite, I had the symptoms, was treated for a a mere 10 days with Doxy before my results came back NEGATIVE. Stopped Doxy, felt better for 5 months, had relapsing fever of 105 degrees and all symptoms, including excruciating joint pain came back. COULD THIS BE AUTOIMMUNE DISORDER? ARE MY CO-INFECTIONS POSITIVE? BECAUSE IT SEEMS THAT THEY ARE ON THE LOW END OF EQUIVOCAL. I'm so indecisive and confused!

HERE ARE MY LYME AND CO-INFECTION TESTS

Recently my neurologist informed me that I tested positive for Lyme. I was over the 80> indication of Lyme for the IMF test (immune-florescence assay test), hence, there was clinical significance that I tested positive. This test specifically says that, "results may remain elevated in case of persistent disease." I was unable to get a copy of that but my IgG and IgG western blots came back negative and IND +/-.


(IgG result - NEGATIVE : : CDC - NEGATIVE)

31 IND
41 ++
58 +

All other bands negative; now would IND mean that the bands could be positive?
I’m confused because IDSA protocol does not require the first 5 bands to be in ELISA test.
yet it is said that if these bands are positive 18,31,39,41, there's clinical significance for Lyme.
Which test is more accurate and why do ID doctors scuff at IGeneX tests?
__________________________________________________________________________________________

(IgM result - IND : : CDC - NEGATIVE)

18 +
31 +
39 IND
41 ++
83-93 IND

All other bands negative
__________________________________________________________________________________________

Co-Infection Tests

Babesia microti
Ref. IgM <20 Negative IgG <40 Negative

IgM <20 Neg
IgG <40 Neg

Babesia Duncani
Ref. IgM <20 Negative IgG <40 Negative

IgM <20 Neg
IgG 40 Positive?

Bartonella Henselae
Ref. IgM <20 Negative IgG <40 Negative

IgM <20 Neg
IgG 40 Positive?

Bartonella Henselae - ABS Test
Ref. IgG <1:64 IgM <1.20

IgG 1:64 H titer Positive?
IgM <1:20 Negative

Mycoplasma Pneumoniae
Ref. <0.90 Positive

IgG 1.78 Positive

ImmunoGlobulin E
Ref. <or=114 kU/L

368 High

TSH
Ref. 0.40-4.50 mIU/L

4.77 High

Mannose-Binding Lectin
Ref. >or=100 Normal

1495ng/mL

All other co-infections came back negative, urinalysis reflex was fine. MY QUESTION: Why are all of the co-infections that I tested positive for were at the borderline ref. range between negative and equivocal. Why not be above 40? For example babesia and bartonella, is at the borderline ref. range of indeterminate positive (Equivocal) or negative. Do they test higher than the ref. range? This makes me weary on if I actually have the co-infection or not.

If you started treatment, stay the course until advised otherwise by a professional.

Unless of course immediate accute side effects or conditions occur.

This is just my opinion

Your concern is a very justifiable reaction. Now give it the space and info needed to react accordingly

J3cpo said...
If you started treatment, stay the course until advised otherwise by a professional.

Unless of course immediate accute side effects or conditions occur.

This is just my opinion

Your concern is a very justifiable reaction. Now give it the space and info needed to react accordingly

I only worry about the side effects of long term antibiotic use. I'm my prescription bottles it states that I have a year supply. I really don't want to be on all these drugs for a year if I'm not getting better.

My joint pain is getting much worse, so I don't think these antibiotics are helping. My mother had Lyme like me and she went straight on IV Rocehpin for two and a half months and is a lot better. Although, her symptoms are starting to return.

birthdaysuit said...
Rifampin and malarone would be the antibiotics administered for Bartonella and Babesia. The only herx I've had was with a tetracycline and Monolaruin. Would this mean that I'm positive for Lyme. I know in my heart that I have Lyme Disease but I'm not so sure about the Co-infections. I'm also not sure what the best option for treatment is? Should I go straight to IV antibiotics such as a cell-wall inhibiting drug, which oftentimes makes Lyme worse. I'm also questioning whether the oral antibiotics were administered and not IV because my LLMD is afraid to get his license revoked.

Plus, I know a lot of people who never got results from oral antibiotics. However, IV Rocephin and they made a full recovery. My doctor said that treating aggressively is the best option. The right drug at the right time, given correctly can turn your life around, I need to find that drug.

I had iv rocephin for many months in 2007 ish
Did help that time

Over time symptoms came back. Reinfection did occur with multiple new tick bites.

Oral antibiotics have also shown to have effects with less hastle and similar results. In my situation.

Stick with the llmd and voice your concerns

Hi birthday suit -

Testing
Going to agree with PeteZa - lyme AND coinfections need a clinical context for diagnosis, which includes testing--not reliant upon testing. The LLMD will get a deep understanding of symptoms and other health history as well as a good idea of your body system status (what the impact of the lyme & co infections has been to your other systems--what might have been pre-existing, what is ongoing) and your level of immune function to determine what your current infection load is and how to treat it and support your health as well.

So--in other words, don't stress too much over the minutia of very, VERY inaccurate testing. If you've read the "new to lyme?" thread at the top of the page (which you should ASAP if you haven't already) you know that most testing relies on a highly functioning immune system for accurate results, which most people w/ lyme & co simply don't have.

LLMD
Also - there are likely several reasons your initial MD prescribed a short course of abx--it's the "standard" protocol. It's not effective for most people, but it's what MDs who don't specialize in lyme & co treatment are told to prescribe. You won't get a lyme & co-specific treatment until you get to a specialist.

IV vs oral abx
The difference between IV and oral abx or any protocol is very personal. I've also read that IV abx are more aggressive but I don't necessarily think that's true across the board. There are also other reasons people use IV over oral or herbal over pharmaceutical. You just have to figure out what works best for you and this also sometimes changes over time.

I have been on a combination of IV pharmaceutical abx and oral antibiotic herbs and I'm still cycling through options in my protocol--discovering what works and what doesn't. I didn't have success with some herbal protocols for lyme and I have had debilitating GI issues so I went straight to IV--never used oral pharmaceutical abx for lyme. I started with herbal tinctures for bartonella but they were causing severe reactions so now I'm also on an IV abx for bart. I can share more about IV treatment if you like. I am hoping to one day be able to transition to herbs only. With a long history going untreated (16+ yrs for me) multiple coinfections and other complications is a long journey with various stages.

Protocol approach
Unfortunately, day one isn't checking off boxes with definitive diagnoses and day two starting corresponding treatments. It's based on what your LLMD has had success in treating most patients with and also a LOT of customization and trial and error depending on how you react to various components of the protocol. For this reason, it's very useful to incorporate one item of your protocol at a time so you can better interpret and understand your reactions.

Joint pain
The joint pain could be from the infection(s) or from something you're not treating for, lack of effective detoxing, yeast/fungal overgrowth, inflammation from the treatment or toxins, or an autoimmune response. It's tough to say - you'll need to experiment with a few things. This is why an LLMD will help you--he/she can help you decide what to switch up regarding your current protocol and other avenues to explore.

Hope this is helpful - please continue to ask questions and let us know if we can help you find an LLMD.

-p

Post Edited (Pirouette) : 5/12/2016 2:36:36 PM (GMT-6)

Pirouette said...
Hi birthday suit -

Testing
Going to agree with PeteZa - lyme AND coinfections need a clinical context for diagnosis, which includes testing--not reliant upon testing. The LLMD will get a deep understanding of symptoms and other health history as well as a good idea of your body system status (what the impact of the lyme & co infections has been to your other systems--what might have been pre-existing, what is ongoing) and your level of immune function to determine what your current infection load is and how to treat it and support your health as well.

So--in other words, don't stress too much over the minutia of very, VERY inaccurate testing. If you've read the "new to lyme?" thread at the top of the page (which you should ASAP if you haven't already) you know that most testing relies on a highly functioning immune system for accurate results, which most people w/ lyme & co simply don't have.

LLMD
Also - there are likely several reasons your initial MD prescribed a short course of abx--it's the "standard" protocol. It's not effective for most people, but it's what MDs who don't specialize in lyme & co treatment are told to prescribe. You won't get a lyme & co-specific treatment until you get to a specialist.

IV vs oral abx
The difference between IV and oral abx or any protocol is very personal. I've also read that IV abx are more aggressive but I don't necessarily think that's true across the board. There are also other reasons people use IV over oral or herbal over pharmaceutical. You just have to figure out what works best for you and this also sometimes changes over time.

I have been on a combination of IV pharmaceutical abx and oral antibiotic herbs and I'm still cycling through options in my protocol--discovering what works and what doesn't. I didn't have success with some herbal protocols for lyme and I have had debilitating GI issues so I went straight to IV--never used oral pharmaceutical abx for lyme. I started with herbal tinctures for bartonella but they were causing severe reactions so now I'm also on an IV abx for bart. I can share more about IV treatment if you like. I am hoping to one day be able to transition to herbs only. With a long history going untreated (16+ yrs for me) multiple coinfections and other complications is a long journey with various stages.

Protocol approach
Unfortunately, day one isn't checking off boxes with definitive diagnoses and day two starting corresponding treatments. It's based on what your LLMD has had success in treating most patients with and also a LOT of customization and trial and error depending on how you react to various components of the protocol. For this reason, it's very useful to incorporate one item of your protocol at a time so you can better interpret and understand your reactions.

Joint pain
The joint pain could be from the infection(s) or from something you're not treating for, lack of effective detoxing, yeast/fungal overgrowth, inflammation from the treatment or toxins, or an autoimmune response. It's tough to say - you'll need to experiment with a few things. This is why an LLMD will help you--he/she can help you decide what to switch up regarding your current protocol and other avenues to explore.

Hope this is helpful - please continue to ask questions and let us know if we can help you find an LLMD.

-p

Thanks guys and girls for the quick responses!

I was just scared because my MD was concerned about the harm factor of taking so many strong antibiotics for so long. I'll stick to my protocol prescribed by my Lyme Pediatrician. Funny thing is that I'm an adult but seeing a Lyme pediatrician. You guys probably know him from Under Our Skin documentary.

I haven't really herxed, a part from the joint pain but then again, I also remember what it felt like to be normal and energized and I'm certainty not the battery I use to be. My fatigue is through the roof and I have the worst exercise intolerance. My joints seem to hurt the worst in the waking hours of the morning. Takes me a good hour to get out of bed because I'm so uncomfortable. Prior to my antibiotics my joint pain wasn't as bad.

To Girlie - I am getting a second Thyroid Panel Test this weekend. What would be a good approach to balance out my Thyroid and get rid of mild hypothyroidism? Are there herbal approaches? Also, I have to check for interactions.

If you do indeed have low FT3 and FT4 levels - you would need to be on a thyroid med - there are synthetic and natural ones. What were your test results for those?

Remember - it's the F (free) T3 and FT4 you need to get done.

And what is this ImmunoGlobulin E? Why is it elevated and I was told that I could need injections of some sort of ImmunoGlobulin if the antibiotics do not work. I know that it's like 10,000 dollars or something ridiculous and insurance doesn't cover it

Pirouette said...
birthday suit -

Your protocol is pretty common. Some else might be able to speak to the specific abx better than I. The main reason to be on multiple abx is that the lyme exists in 3 forms: spirochete, cyst and biofilm and each requires a different abx. A different abx is also used for confections, or anti-parasitic for the babesia.

Yes - I would start looking for a new LLMD since yours is retiring (and it's great that you're seeing him - he's saved so many kids). So, you can ask your new LLMD to do more thyroid function testing or you can see an naturopath. Or, even better and if you have the time available - you can read up and educate yourself and ask for the specific testing that needs to be done. stopthethyroidmadness.com is a good resource - the founder of the site is now selling a book (which I am not promoting) but there is still great info for free on the site.

-p

Thanks for the response!

I was told that Rifampin (Bartonella) and Malarone (Babesia) shouldn't be used at the same time.

Somebody said...
The Rifampin actually decreases the availability of the Malarone (or more accurately the Atovaquone in the Malarone) by something like 40%. It's the same with tetracyclines like Doxy or Mino.

People have brought up these interactions many times in the past, so I'm a little concerned about that. My LLMD said it was fine though.

I was also told that Malarone is good for Babesia, but it shouldn't be the only drug you use for it because the Babesia will gain a quick resistance.

And in regards to Bart:

Somebody said...
Rifampin is used for Bart, but is a big no-no to use as a mono-therapy. The Bart will also develop a quick resistance. Again, Rifampin is generally prescribed with a macrolide as well.

Somebody said...
On top of all of this, being on these drugs (even if they don't really go together, which they don't) for a single month isn't going to be enough to get you better, or likely even notice a difference.

Also, I'm not really taking any cyst busters or drugs for the various lyme spirochete forms. Not sure if my LLMD will introduce these to me because he says to start off antibiotics slowly. I really believe my LLMD to be the best and a genius, I'll continue my protocol but from the looks of what others are telling me it seems that these drugs should not be used together and resistance is built fairly quickly.

Post Edited (birthdaysuit) : 5/12/2016 4:43:52 PM (GMT-6)

Good! Hopefully you will find some relief soon.

Some lyme doctors like to ease you into a protocol instead of attacking everything and all forms at once. In your situation, considering your pain and fatigue, it seems like this is what the llmd is doing. Lowering the load before attempting to clear it.

It is perfectly normal to have the anxieties and reservations. Especially when considering the amplification the diseases present to the nervous system and its related psychology

astroman said...
Birthday suit: You look to be hypothyroid per your lab below. Dres are NOT good with hypothyroid detection. Symptoms can be just like lyme - can do almost anything to the body.

"TSH
Ref. 0.40-4.50 mIU/L

4.77 High"

I would suggest getting further thyroid testing , not just TSH, which is : Free T3, and Free T4. If these are in range, but less than half, you are still hypo to some extent and would be expected to have hypo symptoms.

Yeah, I'm mildly Hypo. All of my symptoms go hand-in-hand with the classic symptoms of Hypothyroidism. I don't doubt that this is potentially exasperating my issues but I also doubt that this is the main cause.

I've tried herbs in the past and read that ashwagandha is great for hypo sufferers, however when I took it I felt even more fatigued and mentally drained. Deficiency in iodine and selenium can cause Hypothyroidism and Lyme can play a role as well. When ever I went on a high fat diet; grass fed beef/lamb and coconut oil with various kinds of low murcury fish I felt a lot better. Less fatigued and mentally drained.

Honestly, the best I've ever felt in my life was when I was eating this diet and taking 2000IU vitamin D3 a day and Creatine. Zero herbs or supplements other than the ones I mentioned. I obviously I had Lyme at that time but I really felt energized and had zero Hypo or Lyme symptoms other than the occasional joint pain.

Post Edited (birthdaysuit) : 5/13/2016 7:28:59 PM (GMT-6)

Birthdaysuit astroman knows his stuff when it comes to thyroid.