Do you think my daughter has Chronic Lyme?!?!?

Hi All,

Daughter told she has CLD based on the follow information:

Symptoms:
1. Severe dry eyes (specifically meibomian gland disease; started age 14 and progressive worse)
2. Right knee and foot pain (sole burns, top hurts) which gets worse with use; no inflammation; no known cause (extensive physical therapy with little benefit); left knee pain started with minor injury which should have healed in a couple week; it has now been six months (pain does not migrate)
3. Very short period cycle (~21 days) from age 17 to this past summer (now normal)
4. Fatigue and loss of appetite (started with SIBO treatment this fall)

Lab results
1) LabCorp Abs. CD8-CD57+ Lymphs low (reading 48)
2) Western Blot Lyme Abs, IgG & IgM By both Negative (all bands negative but IgG bands 31 and 34 not tested)
3) iSpot Lyme test by Pharmasan Labs Positive for Lyme (IFN-gamma secretion = 41 SFU)

We live in Utah but have traveled to east coast and Germany.

LLNP wants to start antibiotics asap.

Thoughts?

Thanks!

A friend said bullzeye showed up after treatment started...i had bullz from what i thought was spider many moons ago..one doc says 4 of 10 mosquitos have it..it is std also...one guy got it from someones tear.... she is having gut issues there maybe parasite factor...has she done stool test ,h pylori ,checked for cdiff . Have you done genitic testing? Have you considered iv or herbals.. there is bvt rife and many other modalities ...dr k says biggest to smallest, parasites mold bacteria then viruses...you are in for a ride..you are a great father researching for her ...get the abx.as backup...read the new to lyme at top of forum...there is great threads here check out travs chronic tonic...gael/keebler on lymnet are wise. .there was a guy on md juction named Mitchel who layed it it all out. There is no known proven cure we are all different. I have seen spirochete infect my blood cell how do you fight such a hellspawn....with fire

I had very bad dry eye until I started treatment. Also really bad joint pain that doesn't improve or gets worse from PT. And bad GI issues too.

Welcome DryEyeDad!

Sorry for the reason you're here but glad you found us. This forum is full of caring and knowledgeable people.

Please understand that Lyme and its coinfections have the unique ability to suppress the immune system. Therefore, the longer a person remains untreated, the harder it is to beat the infections without treatment.

To make matters worse, testing for these infections leave a LOT to be desired.

The Western Blot test measures antibody response. Well, if a person's immune system is suppressed, they're not going to mount much of an antibody response, if they mount one at all.

And, mainstream labs such as LabCorp and Quest don't even test for the bands most likely to test positive for Lyme.

Even the CDC says on its website that Lyme is a clinical diagnosis - based upon symptoms:

www.cdc.gov/lyme/diagnosistesting/index.html

"Lyme disease is diagnosed based on:

Signs and symptoms
A history of possible exposure to infected blacklegged ticks

Laboratory blood tests are helpful if used correctly and performed with validated methods."

Did the LLNP mention anything about Bartonella? It's becoming more prevalent than Lyme. In fact, scientists mention that Lyme should be considered a coinfection of Bartonella. I ask only because of the sole pain you described - that's hallmark for Bartonella.

You'll know soon enough if the LLNP is right with the diagnosis once your daughter is started on antibiotics. While not everyone herxes, it's very, very common with Lyme and its coinfections. LLMD's often diagnose based upon herx symptoms a patient reports. Here's some info on herxing:

www.tiredoflyme.com/the-herxheimer-reaction.html

Detoxing helps minimize herxing. Since we all live in a toxic world, your daughter would benefit from starting a detoxing protocol now. It will help clear the toxins that are already in her body and make treatment more bearable. The same site I linked above has another section with quite the comprehensive list of detoxing methods:

www.tiredoflyme.com/detox-methods.html

Please read through our "New to Lyme? Start Here!" thread that sits at the top of the forum. It contains lots of useful information that can help time and time again.

You'll find symptoms lists (it's rare for someone to have every symptom...we each have our own particular constellation of symptoms and that often builds until we start treatment....and could very well escalate unless the body can detox properly)

There's information about test interpretation, detoxing, financial assistance and more.

Please let us know if you have any questions. The collective knowledge on this forum is incredible and we can link you to reliable sources of information....misinformation is rampant.

Best of luck to you moving forward!

DryEyeDad,

Please know that Bartonella suppresses immune function even more than Lyme does. In fact, the presence of Bartonella is often the reason Lyme tests come back negative.

In addition, there are more strains of Bartonella than tests available.

Once again, we're back to a clinical diagnosis.

I subscribed to MR's Treat Lyme book but have not reviewed his protocols since I'm already having success with Buhner.

Since my symptoms have always been mild, I must admit I regret not following an herbal protocol from the beginning. Herbs do not damage the gut like abx do which further destroys the immune system ( 70-80% resides in the gut). Herbal protocols also address other important aspects of healing such as immune support, cytokine remediation and healing of the organs under attack.

I suggest starting another thread asking for input on Marty Ross' protocol - it will get more attention.

I also got the bulls- eye rash after I started treatment and I don't remember getting bit by a tick. I went years without knowing what was wrong. I congratulate you are being so proactive! What a dad!!

I have also done the Ispot. Did you also take the Ispot Western blot with the elespot test? They are often a combo so that they can get a full picture. 42 is positive. If your western blot was with lab corp, I would not trust it alone.

"iSpot Lyme™ is a new testing methodology that complements Western Blot, because it measures something completely different: T cell response to four specific Lyme antigens. Unlike antibody production, T cell response kicks in just 4–6 days after infection. As a result, iSpot Lyme allows for earlier detection than Western Blot." http://ispotlyme.com/healthcare-practioners/
https://neurorelief.com/index.php?p=cms&cid=486&pid=149

You mentioned igenex , was your Western blot for lyme also from them?

A Lyme professional can look at this along with symptoms and give you a good direction to head. Sometimes we learn more along the way. A good process brings a better outcome!

MR protocol:

Tier One

Rifampin-based Treatments. In these treatments Rifampin is the main effective ingredient. I combine Rifampin 300mg 2 pills 1 time a day with one of the following:

minocycline 100mg 1 pill 2 times a day,
bactrim DS 1 pill 2 times a day or
azithromycin (Zithromax) 500mg 1 pill time a day.
Doxycycline 100mg 1 or 2 2 times a day can be substituted for the minocycline, but rifampin decreases doxycycline levels in the blood. Clarithromycin (Biaxin) 500mg 1 pill 2 times a day can be substituted for azithromycin but rifampin also decreases clarithromycin blood levels.

Flouroquinolone-based Treatments. Flouroquinolones are a class of antibiotics that include a number of members like levofloxacin (Levaquin) and ciprofloxacin (Cipro). I combine levofloxacin 500mg time a day or rciprofloxacin 500mg 1 pill 2 times a day with one of the following:

minocycline 100mg 1 pill 2 times a day,
doxycyline 100mg 1 to 2 pills 2 times a day, or
bactrim ds 1 pill 2 times a day.
Clarithromycin and azithromycinare not used with flouroquinolones because together they may cause heart rhythm problems. Levofloxacinseems stronger than the ciprofloxacin.

Clarithromycin and Bactrim DS. I combine clarithromycin 500mg 1 pill 2 times a day with bactrim ds 1 pill 2 times a day with good benefit.

Tier Two

A Macrolide Plus a Tetracycline. Use one of the following macrolides:

clarithromycin 500mg 1 pill two times a day or
azithromycin 500mg 1 pill 2 times a day.
Combine these with a tetracycline:

doxycycline 100mg 1 or 2 pills 2 times a day,
minocycline 100mg 1 pill 2 times a day, or
tetracycline 500mg 1 pill 3 times a day.

Tier Three

Houttuynia plus Sida Acuta: I started using these two herbs together in the summer of 2015. This combination works about 70% of the time. Start houttuynia at 5 drops 2 times a day and increase daily by 1 drop per dose till at 30 drops 2 times a day. At the same time take Sida Acuta from Woodland Essence as 1/4 tsp 3 times a day and after 1 week if tolerating it increase to 1/2 tsp 3 times a day.

Prior to using this combination I was not impressed with other herbal options. For instance I have tried a formula called A Bart by Byron White herbs which seems to help less than 50% of the time. Likewise houttuynia by itself only works 50% of the time.

Treatment Course

For most of the combinations described above, treatment requires 4-6 months. The only exception to this is a treatment which includes levofloxacin which typically requires 1 to 3 months. I treat until most of the bartonella symptoms appear resolved. Fortunately, using the immune supports and tier one or two approaches 95% of people recover from bartonella. The remaining 5% may have relapses or require continuous antibiotics to keep bartonella under control.

And there's always an herbal protocol....