Does this sound like Lyme or Bartonella or something else?

I'm writing on behalf of my sister, who has Down Syndrome, and who we suspect has Lyme. We already went to one of the "top" infectious disease doctors in our area and were told it wasn't Lyme, based on the results from Quest labs. He refused to sign-off on IGeneX . We are still in the process of getting in touch with an LLMD in NJ, but have already started treating her with the Buhner Lyme protocol. We are up to week 4 in the protocol, and are doing the Alka Seltzer Gold, Pinella, and Burber, NAC, methylation protocol for detox. Right now, I'm absolutely terrified for her--she is suffering so much and tells me she wants to die on a daily basis). My parents are in their upper 70s and not in good health, so the pressure is on me to figure this out.

Anyway, I'd be curious to hear whether people on this forum think her symptoms look like Lyme or possibly other co-infections.

Here's how we got here:

In Feb 2014, she got a normal flu (parents caught it from her), but she took one pill of Tamiflu and it blew her gut out (severe diarrhea). She then developed IBS (Tamiflu killed off the good gut flora, opportunistic bacteria took over, and she developed SIBO). We cured the IBS/SIBO with the SCD diet. From Feb- June, she gradually became increasingly weak, and by July it was obvious that though her gut was getting better, she had developed CFS and Fibromyalgia (the theory of Dr. Martin Pall on the onset and maintenance of CFS and the NO/ONOO cycle kind of explains how we got there). By the end of Dec 2014, we resolved a lot of the Fibro traveling pain symptoms (supplements for mitochondrial repair, methylation protocol, and antioxidants and nitric oxide scavengers), but she still was getting weaker.

In January 2015, when the CFS was at its worst, this strange vibration symptom popped up (mainly in her shoulder and tailbone). By April/May of 2015, all of her CFS/Fibro symptoms were completely gone, but the strange vibration symptoms still remained and were gradually getting worse. They started to bother her on a daily basis, mainly in the evening. She also started to complain of "pounding" sensations down her back in the evenings. In August, her symptoms became dramatically worse, with the vibrations being much rougher and accompanied by humming and buzzing. We then found out that at the same time the next-door neighbors got WiFi and had it on 24/7. Initially we thought she was sensitive to WiFi, because when she got in the car and we drove her around, she felt much better and the symptoms went away. After my parents shielded the home, her symptoms remained, so we realized it wasn't just the WiFi. That's when we started to think she could have Lyme, since people with Lyme were the only ones I found who recognized the vibration and humming sensations ( our thinking is that maybe the wireless radiation made whatever is in her more virulent and aggressive).

In September, she had her first episode of tinnitus, which we were able to get rid of by driving her around. Since then, the tinnitus has become increasingly worse ( couple of days on, couple of days off, etc). She also now has vibrations/noise in her neck, shoulder, lower back, and head--her symptoms have become increasingly severe (not sure if this is because we started treatment and are killing it or if the infection is worsening). She is also sensitive to light, sometimes complains of having trouble closing her eyes at night to sleep because they hurt, and has traveling pains that are, right now, quick to resolve.

I guess what is puzzling is that we have no recollection of a tick bite, though she's been bitten by mosquitoes lots of times. Is it possible that something like Lyme could have been dormant in her and suddenly became activated when she was at her weakest with CFS (it was literally within a week of the peak of CFS, when she could barely walk and collapsed when she crawled).

Any thoughts or suggestions would be greatly appreciated. Right now, we just aren't sure if we should also have her tested for Bartonella or something else. Oh, also, Quest labs did a test for Babesia, which was also supposedly negative. Also, since I don't really know if it's Lyme, I'm kind of concerned that instead of the Buhner protocol, I should have started the Cowden protocol, since a number of those remedies are broad spectrum and should kill off a bunch of things.

Hi Sarah,

Thanks so much for your quick response.

Okay, I'm going to print the results below, but I'm already confused b/c they were supposed to be ELISA and Western Blot, but I don't see that written anywhere. Here's exactly what the Quest info says:

Lyme Disease AB w/REFL
To Blot (IGG, IGM)
Lyme AB Screen < or = .90 (which, according to the index is negative)

But that just seems like one test result. If ELISA and Western blot were ordered, shouldn't there be two results? If that's a dumb question, sorry for my ignorance--this is all very new to me. On this form, the Babesia is still pending, so I'll have to find the separate results for that.

Okay, Quest was supposed to send copies of the bloodwork to us, but they never did. My mother was told that the Babesia results were negative, but she still has to go to the doctor's office to pick them up. From what I've been reading, it doesn't sound like Quest is actually a reliable lab at all. We are definitely going to pursue testing from IgeneX, as soon as we can find an LLMD who will sign off on the forms. We'll also have to look into more reliable testing for the Babesia.

The stupid two tiered testing system is unfortunately encouraged by the CDC
www.cdc.gov/lyme/healthcare/clinician_twotier.html

so it's not entirely all on Quest.

Once you get to the LLMD, I would at least get the Lyme Western Blot (IGG & IGM) and the Babesia titers lab for your sister if you have the funds.
The babesia ones are these
Antibody IgG & IgM for Babesia microti
Antibody IgG & IgM for Babesia duncani (formerly WA-1)

And also, even if any of the tests you have run are negative, they could still be false negative. IGenex is the best but the tests are still flawed.

@Sarah and Traveler-

Thank you so much for your informative responses. We'll definitely get those tests for Lyme and Babesia as soon as we find a good LLMD. I was also wondering about Bartonella (I thought I read somewhere on one of these threads that Bartonella can also cause the vibrations), but since nobody mentioned it, I think we'll skip that one.

I developed vibrations when I was on abx and asked my LLMD about Bartonella (my symptoms were mostly neuro anyway and I'd read that Bartonella should be considered at times such as these). He kept insisting I was only dealing with Lyme.

I live in NJ and learned that 70% of NJ ticks tested were positive for Bartonella.... I wouldn't be surprised if your sister is dealing with that as well - sorry.

The ticks that infect us are as small as the dot at the end of this sentence. If she got bit behind her ear...in her hair, etc. she wouldn't know.

Add in the fact that the tick actually numbs the site it's attached to and we really don't stand a chance unless we see the dang thing and even then, infection can happen in minutes (not more than 24-48 hours as the misinformation flies)

Coinfection testing is less reliable than Lyme testing. And, there are more strains of Babesia and Bartonella than tests available. Throw in the fact that new strains are being discovered every few months and we continue to come back to the need for a clinical diagnosis - one based upon symptoms.

To make matters worse, there are healthy people walking around with asymptomatic Babesia and Bartonella infections. Even the CDC acknowledges this on their website:

www.cdc.gov/parasites/babesiosis/

"Although many people who are infected with Babesia do not have symptoms, for those who do effective treatment is available."

www.cdc.gov/bartonella/clinicians/index.html

"Most cases of cat scratch disease (CSD) resolve without treatment", although some patients may develop complications from disseminated disease.

Cat scratch disease is the henselae strain of Bartonella which is a common coinfection to Lyme. B. henselae is quite common in NJ

Researchers and savvy doctors are now saying that Bartonella is so prevalent that Lyme should be considered the coinfection.

If healthy people can have no symptoms of Babesia or Bartonella and still be infected, it's entirely possible that those of us dealing with any of these infections could also be infected with Babesia and/or Bartonella....and not necessarily have any symptoms...or have mild symptoms...or just one symptom (mild or not)

My LLMD remained firm in his diagnosis of Lyme for me yet he could not explain why I couldn't shake some of the mild peripheral nervous system symptoms I had after 5 months of abx and almost 6 months on the full Cowden protocol.

Even though I herxed with Babesia symptoms on Babesia herbs and Bartonella symptoms on Bartonella herbs, he wouldn't entertain any coinfection diagnosis(es) unless I got tested. Since I knew how unreliable testing is, I decided to instead spend my money on more herbs. I'm estimate myself at 98% healed and feel very close to raising that to 99% :)

IMHO, I think you should stick with Buhner. Cowden doesn't have enough herbs in his protocol that effectively address the coinfections....and the recommended doses are a lot lower than Buhner's.

In addition, Buhner incorporates helpful supplement recommendations geared to the particular infections as well as herbal recommendations to address specific symptoms.

Yes, he has the core protocols that we are best off following but, the rest is basically a build-as-you-go type of thing and the end result is the individualized protocol each of us really needs.

Your sister is so very fortunate to have you advocating for her. Best wishes as you move forward!!!

None of these infections (bartonella, babesia) represent a problem for a healthy immune system. They are self-limiting. Thus, sadly if you go to a GP and say u have Bartonella , EBV or CMV, they will start laughing at you. It's one of the reasons this lyme disease is such a misunderstood condition, doctors hate it. 70% of the population is positive for EBV, over 90% is positive for CMV and around 30% for bartonella. But nobody else complains about them because they have no symptoms. So you look like a mentally unstable patient...

For example Bartonella quintana, responsible for about a third of the bart infections, is a bacteria that affected over 1 million people during WW1. Almost all of them recovered quickly.

What happens in immune-suppressed individuals it is very very different than in the immuno-competent ones. For example people with AIDS can have horrific systemic bart infections.

Some good doctors will maybe guess some immune system problem, and test you for AIDS, cancer, etc... Before i got the lyme diagnostic i got tested for HIV 3 times by 3 different doctors... They know HIV creates immune suppression, but they dont know lyme does, too...

In 2015 we learned lyme disease creates a state of immune suppression in the body, which has been proven in vivo
journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004976
Mice infected with Borrelia were given a flu shot, but they have not developed immunity and they still got sick with flu. But this is like latest and greatest research so few in the medical community know about it right now.

So, like with AIDS but not as bad, lyme creates this immune suppressive situation in which all these virtually easy infections like Bart, Babs, etc... that usually are asymptomatic or resolve in a week or so, become chronic and self-perpetuating. That's why they are called opportunistic co-infections, they would not be able to thrive on their own.

Resolving borrelia infection usually triggers a slow resolution in all other co-infections in the body, including Bartonella, babesia, candida, EBV, CMV, Coxackie and who knows what other agents. The problem is the current antibiotics cannot effectively sterilize borrelia, and treatment relies on the immune system to mop up. When coinfections are present, they make the immune system even more busy and the mop-up will often fail and relapse occur. Thus, you can't really get rid of borrelia without treating coinfections at the same time, to lower their count.

Some of us, after many months of treatment, are in the state where borrelia is no longer a problem on its own but some of the co-infections, like Bartonella, because they used to be so widespread, have lots of biofilm reserves in the body, and will give the immune system a lot of trouble for years after the intial lyme infection has been somewhat resolved. Also, the immune system will not be fully recovered for a long time. There is another problem here, some people have other immune system issues, yet undiscovered, which along with the initial borrelia infection, create the state where all these other bacteria can use to proliferate. The can include
- lack of some essential minerals like zinc, selenium
- some gene mutations that make the immune system less effective at destroying some pathogens
- diabetes
- cancer
- an allergy to something yet undiscovered that gets the immune system confused and instead of attacking the invaders it shoots into harmless chemicals. Confused immune systems are less efficient.

Just trying to show why is so hard to treat this lyme disease complex condition and why just prescribing antibiotics is not the perfect solution to everything. It's hard for new people to understand why this is so difficult.

Post Edited (mpost) : 1/10/2016 5:51:41 AM (GMT-7)

Girlie- Thanks for your response. I somehow missed your questions. Not sure about the swollen lymph nodes (the "top" infectious disease guy never even did a physical examination). As for rib or foot pain, not really. She has really quick pains (nothing like the Fibro pains she used to get) that jump around--shoulder, wrist, ankle, arm. The only ache/pain that sometimes lingers is her lower back. She occasionally has something she refers to as "foot popping"--I don't think it really hurts her. I think it just feels like little taps on the bottom of her feet, kind of a gentler version of the "pounding" she gets down her back, which apparently feels like someone is hitting her (this one makes her cry at times). FWIW, she also gets a "bouncing" feeling in her back, or neck, maybe even once in her head. As for anxiety, yes she does, but that's also a bit of her personality (she's always been fearful and given to panic--scares very easily) and makes sense given the scary nature of her symptoms.

Mpost and CD- Thank you so much for your informative comments. It's really so much to take in--my head is honestly a bit jumbled in terms of putting the right protocol together and how to sequence things.

On Buhner's books, I went with the first one b/c the reviews were really good and the new one wasn't out yet and I was in a rush to get started. I guess now I'm going to have to rethink things--from his site, it looks like he dropped the Andrographis from the core protocol and added Eleuthero. I'm actually surprised he took that one out b/c in book 1 he described it as one of the best ones to use. Now I already ordered a bottle of Eleuthero that I was going to add in b/c he mentioned it as helpful for severe symptoms. I was also going to add Stephania b/c somewhere in the q/a on his site, he recommended it for humming. I just put an order in for the book that addresses Bartonella, but it sounds like maybe I should get the book on Babesia?

Prior to reading your posts, my thinking was that once I got her up through a full week of Week 5 dose from book 1 (Cats Claw, Jap Knot, Andrographis, plus Sarsaparilla and Vinpocetine for ears/eyes and some other supplements), then I would start to treat Babesia (since it sounds like trying to treat that first, may help treating the Lyme) . In book 1, he has Artemisinin and Red Root. I was actually thinking of just doing the Artemisinin and adding Lugols Iodine, since that kills malaria and Buhner says Babesia is sort of like marlaria. Incidentally, in my initial post, I forgot to mention that in early Sept ember, she had a strange sort of "hot flash"--it was actually very scary, happened in the evening, kind of woke her up, she said she felt like a furnace and her skin all over was hot to the touch. It went on for a long time (maybe an hour), no sweating, but very scary (I kind of wondered whether her immune system was trying to kill something off). Then, after I got through the 30 or 40 days of the Artemisinin, I was going to add stuff for the Bartonella (assuming the book arrives by then).

I guess I'm just going to have to think all of this through. Any thoughts or suggestions are always appreciated.

CD- Thanks so much for all the info.

I just placed an order for Buhner's book on Babesia, and I'm going to get Cryptolepis, Sida Acuta, and Alchornea (looks like the only place to get those is woodlandessences).

As for detoxing, right now I'm giving her Pinella and Burbur about 5 times a day (the bottles say several, so I'm assuming that's okay). I'm not sure they are having an impact, but I'm just sticking with them b/c I want to do something for her. I also give her the Alka Seltzer Gold 3 times a day. I'll go ahead and get Red Root too. I also have her on a methylation protocol, plus milk thistle and NAC.

Just so you know, Eleuthero is part of more than one of Buhner's protocols.

Buhner emphasizes that his recommendations are just that: recommendations. If a particular herb's action looks like it might benefit you/your sister, he recommends trying it.

There is so much flexibility with the immune support, organ support and symptoms relief herbs...choose what makes sense for you and slowly integrate stuff.

Remember - getting going on small doses of a variety of herbs provides maximum benefit.

The supplements you've added are excellent.

I agree with Traveler about more things for detoxing - especially if you're going to be treating for Babesia. (I think I explained why - if I didn't and you want to know, just ask)

How about some dry skin brushing? I never even heard of the term before Lyme and now I'm hooked on it. I find dry sking brushing before my shower to be relaxing and rejuvenating at the same time.

Dry skin brushing not only opens up the skin (major player in the body's detox systems). It also helps get lymph fluid moving - another big detox player.

Our lymph nodes often get clogged with "debris" from treatment...the better the lymph system flows, the faster healing will occur.

Another way to easily move lymph is to end a shower with a cold rinse. This constricts blood vessels which again move lymph. Being able to move to a warm area afterwards is vital for obvious reasons.

One other suggestion that I regretted not taking earlier in treatment was the use of a binder. I liked activated charcoal (has to be taken 3-4 hrs away from everything including meds, food, supplements).
I currently take a few tabs of organic broken cell wall chlorella.

Best wishes to you moving forward! You are really doing a phenomenal job!