Is this Lyme or Chronic Fatigue?

A little bit about myself, I am a college student who has been dealing with Lyme Disease for almost three years. I was first diagnosed in 2014 by my infectious disease specialist, and received treatment with Doxycycline for 6 weeks. Once I stopped the medication, I got all my symptoms back full force. My doctor then put me on an additional two weeks of Doxy but I did not feel any effect from it. I tried an herbal supplement protocol for 4 months and I didn't feel any improvement. I even tried having my infectious disease specialist switch antibiotics, so I tried Zithromax for a 2 weeks and I had to stop because I was experiencing extreme fatigue a few hours after I took it. I've bounced around from many doctors, including LLMDs, with no results, but most recently, I found an LLMD that may have the answer to getting me well. At my appointment I brought him all the bloodwork I have received from 2014 until now and my most recent bloodwork said that the Borrelia came out positive. Both the iGG and the iGM came out positive and it was the strand p41. The first time Lyme came out positive for me in 2014, it showed a different strain (p39) instead of p41 and only the iGM showed up positive. What exactly does this mean? Do you think I am still dealing with Lyme or was my Lyme treated and do I have chronic fatigue as a result? In my doctor's opinion, he thinks my Lyme was already treated and I am now dealing with chronic fatigue.

The treatment that my most recent LLMD wanted to start me on was low dose Naltrexone, glutathione drops, vitamin b6 P5P, sublingual B12, and activated charcoal for detoxing. I'm a little skeptical about the prescription. Has anyone tried LDN and has it cured or managed their fatigue? The only severe symptom I am experiencing is fatigue, but I notice that exercise and the heat makes my fatigue worse. I occasionally get headaches and forgetfulness, but it's manageable.

Lastly, my LLMD asked me if I had any strange symptoms and I told him that on my latest bloodwork, they did a food allergy test and it said I was allergic to beef. It's funny because even before I found out my food allergies, I noticed every time I ate beef I would feel unusually tired a few hours after eating it. My doctor found that kinda odd and suggested that I could have Stari - an infection caused by a lone star tick. Do you think this may be the case? Knowing that the Lyme blood tests are inaccurate, my doctor suggested a DNA test for Lyme. Should I get a DNA Lyme test to confirm if I still have it or is it not accurate?

Thank you,

Angelica

Welcome, and sorry you are here! From what I understand, band 41 is not specific to Lyme. It can come up positive for any bacterial infection that has flagella. That being said, symptoms are the most important piece of the Lyme diagnosis. With your history and the way your symptoms progressed I'd guess that you still had Lyme from not getting adequate treatment.
There is also the coinfection component as well as viruses that can get reactivated and cause some serious fatigue. Lyme does a number on our bodies. Have you ever treated coinfections at all or had any viral loads tested?
I tried LDN for a few months but for me it just messed my sleep up. It's worth a try because it is a game changer for some folks. If it does nothing or has a bad effect you can always stop it.

Hi ChickNorris,

After my course of antibiotics and once my symptoms came back again, I tried something called the Zhang Protocol that involved a complex formula of herbs and I continued it for four months. It was designed to treat all the coinfections because my doctor at the time thought I also had Babesia and Ehrlichia. Here was a list of supplements I was taking on the protocol:

Circulation P - 1 capsule 3x a day
Artemisiae - 1 capsule 3x a day
Allicin (garlic) - 2 capsules, 3 times a day
Al #3 - 1 capsule, 3x a day
Cordyceps - started with 1 capsule 3x a day, and increased it to 2 capsules 3x a day - this was introduced a month later into my protocol

I followed this faithfully for 4 months and did not feel any improvement. There was some days on the protocol, especially in the beginning that my fatigue was worsening. I was also tested for viruses such as EBV and cytomegalovirus and it all came out negative. However, I think I had a history of EBV back in 2014 when my symptoms first came about

ACF, have you had your Vit D and B12 levels consistently checked? I was told too that I had CFS(and Fibro) and eventually blood work was done and showed I was insufficient in Vit D and deficient in B12.

Monthly B12 injections and prescription Vit D made a big difference in my fatigue/energy level for a number of years.


It's not unusual for Lyme sufferers to be low in these areas.

ETA, sublinqual B12 didn't work as well for me as the injections did.

Welcome to the club.

I admire the fact that you are the type looking for answers and not satisfied by a "label" or one Drs opinion. Without hard prof of symptoms and repeatable positive labs any long term illness with overlapping symptoms of Lyme, thyroid, adrenal, EBV, chronic fatigue, fibro ect is very hard to pinpoint.

One thing about chronic fatigue vs fibro is, as a group, (well I'm generalizing ..online forums), they are more curious as to the cause of their fatigue and look further into it vs the fibro group, who seem to be satisfied with a label- and just live with it, taking Rx thats does not do much..

That said, Stari is a possibility, we seldom see it on this board for some reason.......weird? Can you eat other red meat OK? Tried a buffalo burger? Lamb ect? Dont know if pork is a Stari issue. Tried HCL supps with beef? I need that when gut issues re-surface.

Being a college student could make a strict died challenging. Going on a basic elimination diet of what you can eat, then adding stuff back a week at a time can help pinpoint food specific issues.

Igenix testing isn't even that good. It wont detect many long term lyme cases. Have you had complimentary testing like C4a, CD-57 to see any odd immune stuff going on that could be lyme.

And what about thyroid testing? In range, but on the low end will still make hypo thyroid symptoms- I know personally this.

Hi Traveler,

I will look into the links you sent me, especially on the one about Rocky Mountain Spotty Fever. My LLMD never mentioned Rocky Mountain Spotted Fever and that may be the reason I have the meat allergy. Since I tried so many LLMDs, I would try for a non-doctor herbal protocol. And as far as detoxing goes, I ordered activated charcoal and a few other supplements to take daily.

Thanks,

Angelica

ACF612 said...
Hi JulyMorning,

I recently had my vitamin D and B12 levels tested. My vitamin D increased from the low range to normal range, I think it was around 54 units. However, my LLMD told me that my vitamin B12 was low enough to cause fatigue, so he suggested I take sublingual B12 1000 mcg.

And sounds good. I'll order the Igenix test and have my doctor sign off on it.

Thank you,

Angelica

The best test to get is the Lyme Western Blot IgM and IgG for total of $210.

Hi Astroman,

It's interesting that you mentioned the overlapping illnesses because my LLMD suggested that Lyme could have induced adrenal insufficiency or slight hypothyroidism. He did a test on me at the office where I had to lie down and he took my blood pressure and pulse. It was around 120/70 and my pulse was around 85 when lying down. The doctor then made me stand up and waited a minute later to do the readings again. My pulse increased to 100 and my blood pressure dropped about 15 points to 105/65 ish. He said this could be caused by an adrenal problem caused by Lyme but I am still confused about this.

I can eat other meat okay except for beef. Actually I tried bison meat yesterday and felt completely fine on it. Lamb is also okay. In the mean time I am avoiding beef and any other allergens I have.

I have done many elimination diets such as grain free, dairy free, and sugar free and although I haven't seem any improvement, I still maintain a gluten, dairy, and refined sugar free diet and have been writing a food journal about what foods I am sensitive to. I also recently took an allergy test and am avoiding the foods that came back positive. Although this wasn't tested, I notice that I cannot tolerate honey, so I stay away from it.

Last year I was tested for C4a and it came up very high - a little more than double the normal range. I dont recall testing for CD-57, so I will mention that to my doctor.

As a result of my most recent bloodwork, my thyroid tests were in the normal range but my LLMD is going to keep an eye on it to see if the numbers fluctuate. I don't have any of the main symptoms of hypothyroidism, but I know fatigue can be associated with that

Traveler said...
First we have to consider what Chronic Fatigue is - a collection of symptoms. Many things can cause this, including these infections.

The testing for Lyme, Bartonella and others is not good, because Lyme reduces immune function, so often we can't test positive for the infections we have because our immune function simply is not high enough to produce those all important antibodies used for testing. It's common for people to not test positive even though they have these infections (particularly long standing, chronic infections), and to have test results change around - sometimes a lot of changes.

The Lyme bacteria can change it's outer surface proteins (unlike many other bacteria) and the bands will change, depending on what your immune system is responding to. This is why it's not helpful to keep testing once it's been established that a person has these infections. We just go by symptom reduction because there are no tests that can tell when the body has healed from Lyme.

And, actually, it's RMSF (Rocky Mountain Spotted Fever) that produces an allergy to alpha gal - a carbohydrate in red meat.
www.sciencemag.org/news/2012/11/ticked-about-growing-allergy-meat


onlinelibrary.wiley.com/doi/10.1111/j.1863-2378.2012.01475.x/full

The testing for Lyme, Bartonella and others is not good, because Lyme reduces immune function, so often we can't test positive for the infections we have because our immune function simply is not high enough to produce those all important antibodies used for testing.

Trav, does this mean that as the immune system strengthens, there is a better chance of an active infection showing up in testing?

Hi and welcome, you'll get the answers you need here☺

astroman said...
"adrenal insufficiency or slight hypothyroidism" - this is a fact with some people, it happens to many here.

Any whole body infection can cause this. Thats why at one time they called lyme a autoimmune infection- since it starts up autoimmune illnesses in some people. The term "chronic lyme" really takes all this in together- its not just about the lyme bacteria. If it were only about existing bacteria vs what it does , "lyme" would be a little easier.

There are lots of past posts on thyroid and adrenals here. Regular drs dont get adrenals at all, LLMD's should.

Hypo IS about whole body fatigue, 100%, from the inner cellular level. I am completely hypo in the low end of thyroid lab "normal" ranges. Many are. The ranges are a poor guide. Need to be at least mid range is Free T3 and Free T4- TSH is pointless without those levels.

I went full bore into a whole30 version of paleo, but keep going past 30 days. No glutan, no milk products of any kind, no chemicals- its not easy. I plan on more autoimmune testing in a while to see if there are good results.

Hi Astroman,

That's very interesting. My doctor's usually never addressed my thyroid and adrenal levels because they always fell within normal range. This is something I'm going to have to keep an eye on. I have to view my results again, but I think I was in the normal range but in the low end. Like your current diet, I also maintain a gluten, dairy, and sugar free diet and eat mostly organic. I also found out I have a meat allergy so I have to avoid beef. I'm thinking this meat allergy could be a result of another infection from a tick bite from what I have been researching

Purrrsiankitty said...

Traveler said...
First we have to consider what Chronic Fatigue is - a collection of symptoms. Many things can cause this, including these infections.

The testing for Lyme, Bartonella and others is not good, because Lyme reduces immune function, so often we can't test positive for the infections we have because our immune function simply is not high enough to produce those all important antibodies used for testing. It's common for people to not test positive even though they have these infections (particularly long standing, chronic infections), and to have test results change around - sometimes a lot of changes.

The Lyme bacteria can change it's outer surface proteins (unlike many other bacteria) and the bands will change, depending on what your immune system is responding to. This is why it's not helpful to keep testing once it's been established that a person has these infections. We just go by symptom reduction because there are no tests that can tell when the body has healed from Lyme.

And, actually, it's RMSF (Rocky Mountain Spotted Fever) that produces an allergy to alpha gal - a carbohydrate in red meat.
www.sciencemag.org/news/2012/11/ticked-about-growing-allergy-meat


onlinelibrary.wiley.com/doi/10.1111/j.1863-2378.2012.01475.x/full

The testing for Lyme, Bartonella and others is not good, because Lyme reduces immune function, so often we can't test positive for the infections we have because our immune function simply is not high enough to produce those all important antibodies used for testing.

Trav, does this mean that as the immune system strengthens, there is a better chance of an active infection showing up in testing?

In theory it is, but as we strengthen our immune function, we also heal from the infections. But there should be a window of time where the immune function is strong enough to produce enough antibodies to create a CDC positive test. That's why I have a fully CDC positive Lyme and RMSF test - it just took a year of treatment to get me there!

For those that believe they have STARI, I would suggest reading this: peterdspringbergmdfacp.com/blog/?tag=dr-edwin-j-masters

I can say his name, because he's passed away now, but the LLMD that I saw (way back when) was Dr. Edwin Masters - the doctor that did all kinds of studies on STARI and who is honored by the name having been changed from STARI to Master's Disease by his colleagues.