And Another Suspected Lyme/Bart Story

First things first, greetings everyone. I am sorry for the reasons that brought you here, but am so glad to find a safe place to mingle with others who share my fears and experiences. Family and friends certainly don't get it.

Where to begin, I have not felt well or like myself for many years, but standard lab work almost always turns out normal, with the exception of a mildly elevated CO2/blood calcium level here and there. I have been uninsured for a long time, so I have just learned to live with my complaints. Initially, I suspected adrenal fatigue, but all of the necessary treatments backfired and would exacerbate my symptoms, my body is just too sensitive to everything. I finally have health insurance and my symptoms have appeared to have progressed, so I recently found a naturopath who diagnosed me with SIBO, and was the first to suggest Lyme when I discussed my neurological symptoms. I thought no way, I was never bit by a tick.

I don't have the funds to pay for a Lyme test quite yet, so my doctor started me on Allicin, Berberine, and Neem to target the SIBO first (with the hopes that will resolve all my other symptoms). Initially, I started to feel a bit better on the Allicin, but after a few weeks, I added the Berberine and became quite ill and developed what appears to be a bartonella rash. I have raised white lines on my bum that itch like crazy, and my back became extremely inflamed with the classic red scratch marks, as well as lines that look like indented scars ALL OVER. I sent a photo to my doctor and he confirmed that it appears to be a bart rash. I notice these marks appear after a hot bath, and I constantly have red marks or a rash on my skin, along with tiny blood prick dots on my arms (babs?).

Other symptoms are:
Frequent urination.
Dizzy spells where I feel close to fainting, frequent lightheadedness, feeling dissociated.
Ankle, foot/sole, upper/middle back pain, which can be debilitating.
Melasma, pretty bad that is not responsive to treatments.
Developed cellulite everywhere, including ankles and wrists, despite being thin at 110lbs
Vericose veins everywhere.
Major dental issues, including all my teeth shifting, plaque on teeth and developing a strange orange color, multiple root canals on one tooth that doesn't resolve sensitivity, a crown shifting that should not be, dentist commenting that my tooth crumbles when drilled, TMJ, bruxism.
Pins and needles feeling in hands.
Intolerant to cold/constantly feeling chilled or feverish.
Eyes burning and redness, diagnosed with Thygeson's disease.
Beu's ridges on nails (horizontal ridges) with a yellowish tone.
Hair is a ratted, dried out mess, and falling out at temples. Always pulls orange when dyed.
Brain fog, can't think of words, or reversing numbers.
Losing balance when closing eyes.
Scalloped, swollen tongue, making it difficult to speak and biting tongue.
High B12 in blood without supplementing (not properly utilizing), and low ferritin.
Body hair grows in weird patterns on legs.
Sore throat, runny nose, blood in mucus when spit.
Poor sleep quality. TIRED in the morning and throughout most of the day, and then feel better late at night.
38 feeling like I'm going on 80.
Vomiting/nausea.
Lips dry and peeling.
Combo of good days and really bad days.

I am 99% sure I have bartonella (praying it's not from my kitty), do you folks think there is a good chance I also have Lyme or another coinfection? I am wondering if most of you are able to treat the lyme and continue to work. I am feeling pretty down about what may lie ahead if I have to treat because I feel like it will be a LONG road ahead/my body responds pretty violently to treatments, and I don't have the luxury of not working. I have had to discontinue my herbal SIBO treatments simply so I can continue working.

Thank you for taking the time to read this and offer your support and insights. Happy healing to all of you!

Thank you very much for the reply, Cr3ativegirl. It sounds like we share some common experiences. I am so glad you knocked out your SIBO. I read too many accounts of antibiotics not being successful or rebound SIBO, so went the natural route. I might consider xifaxin. I agree that some discomfort is a necessary evil when treating/herxing, but I work a stressful job where I'm talking all day with clients, and need to be on my A game.

I did read about Buhner's herbal tincture, do you feel it is as effective as prescription antibiotics? Also, if I'm treating naturally, could that throw off my test results?

Are you referring to the MTHFR mutation? I was thinking of testing for that, but also figure it might be a good idea just to assume I have it and treat accordingly.

How were you able to distinguish between Lyme, versus Bart, versus other confections, and to know which has or hasn't improved when there's so much overlap?

Hey there, girlie!

I appreciate the warm welcome and reply.

Something has ravaged my once close to perfect skin, and if it's not bartonella, or it's not typically a concern for people, then I'm going to agree that something else has to be going on.

In terms of work, I get by by the skin of my teeth. Meaning that I only work 4 days, and have my schedule arranged so that I work 2 days on, with one day off, then another 2 days worked, followed by two days off. The days I'm not working, I'm almost exclusively home/bed bound. Not the best quality of life. I seem to be very sensitive to cold weather, and recall catching a cold every other week last winter and am expecting the same this year. I have had to hold in my throw up and pee on more than one occasion at work, even contemplated diapers. Have also had several moments at work where the thought of passing out at my desk and having an ambulance called by a colleague utterly mortified me. Based on how I feel with the natural herbs, I really question my ability to work if I start taking stronger antibiotics. For you or those of you that are unable to work, are you on disability or SSI, support of a partner/family, or how do you get by?

Sounds like its very difficult to manage your job. I think you might need to re-think possibly a new situation until you get things under control. Why do you think your boss/colleagues would be anything but supportive? Sorry if that is too nosy. There is a common thread among patients with Lyme, etc that they are type A, burn the candle at both ends, don't acknowledge their true feelings, etc. Your emotional state is directly tied to your health and you sound like you are in a fight/flight mode with your job and that could be contributing to your symptoms.

As far as my diagnosis, My doctor ran the Igenix and it came back positive (CDC negative). My co-infections were diagnosed by a technician/naturopath who does Electro-dermal Screening machine.

I looked at your symptom list and it is really nothing like mine, but that doesn't mean you don't have it. I had more classic Lyme symptoms. Still, I'm sure there is some pathogen/virus having a field day.

I had a lot of mold and candida problems, which symptoms overlap with Lyme. However, each disease seems to have one symptom that gives it away. For example, my foot pain was bartonella all the way. My candida, I know, flares when I eat sugar or drink a glass of wine. Lyme travels around, so any new weird stuff that lasts 2 weeks to a month, then disappears, I believe is Lyme. Burning tingling, horrible headache - Babesia....Its wack-a-mole with me. When I get my screening, she usually confirms my suspicions. I would highly recommend trying to find an EDS tech who is family with Lyme.

Girlie!

I am definitely going to go for the Igenex test through my doctor's office. My next appointment isn't for another 2 weeks. I've read mix info. about whether to test for confections or not, what are your thoughts around that?

I'm sorry you and your husband are struggling financially, but I'm also glad that you are able to take the time you need to focus on healing and recovery. I'm sure you would work if you could. No one would choose to have any of this. I hope you are also getting the emotional support you need.

Hi Haleybugs,

Wow, it does sound like we have some of the same symptoms. Thank you for sharing your experience with me. Are you doing the Igenex test or the standard one? Please keep me up to date with what you find out, I know how frustrating it can be not having any answers. I get the purse mark as well and people would comment, but I never thought much of it. I can also relate to no amount of hair products working, and I've tried all the high-end ones like Kerastase and Oribe, plus internal hair supplements. Have doctors ruled anything else out like thyroid, etc?

I can't imagine how difficult it is with a young child, there certainly aren't any days off as a mom. I hope you get answers soon, and please continue to share your journey with me.

Classic Lyme (IMHO) is the joint pain, fatigue, muscle ache. I had like 80 symptoms off of Dr. Horowitz' questionnaire and you only need a 46. Maybe you should take it!

http://lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

yes, something like that. Maybe higher. I can't really remember it was so long ago.

I have another question. My doctor suspects I may have picked up Lyme while living in Asia. Would the results appear on the US Igenex test?

CatLady18 said...
I have another question. My doctor suspects I may have picked up Lyme while living in Asia. Would the results appear on the US Igenex test?

Why does he suspect that?

I think that would be Borrelia Miyamotoi.
This is from the Igenex website - talking about what they do:

-Test more relevant strains of Borrelia species and other associated tick borne pathogens than other labs.

-Detect other related Borrelia species, like Borrelia miyamotoi, that exhibits Lyme-like symptoms.

-Have our own research and development team, who are experts in Lyme and associated tick-borne related diseases, and are relentlessly committed to developing new and improved diagnostic tests.

-Are hands on and develop our testing criteria in-house based on years of evidence and validation studies.

CatLady18 - I am scheduled to have the WB test, it probably is not Igenex since it is through my Primary Care. I have to ask her which test it is. I am looking into a LLMD doctor in WI. I am still not sure this is Lyme but I don't know what else.

Up until 2 years ago I had no issues with my body or mouth. Back in 2015 started with a white tongue after 5 days of an antibiotic. Ran to the urgent care and got Nystatin which I figured would take care of it. Didn't do anything and I did two bottles of it. My Primary ran a test and negative for thrush. So I just started cleaning my tongue good with a tongue scrapper. That has never gone away.

In 2016 started developing weird symptoms starting with an ache numbing feeling on the side of my face close to the ear. It is not my jaw, so TMJ was ruled out. Then I noticed one of my teeth on the bottom hurting and looked in my mouth and saw a red indentation below the gum line. I was watching it and since I am now looking in my mouth I notice my gums thinning and receding (not just one tooth) but the whole bottom. I get discomfort in the bottom of mouth from one side to the other and more in the gums and below. Plus now my teeth are shifting and moving all on the bottom from the back teeth to the front, which I think is some of the discomfort I feel. The ache on the side of my face has never gone away either.

I have never had periodontal disease, just a few cavities filled over the years and cleanings regularly with no issues. I have no crowns or root canals and never braces. I have been to dentists, Perio's, Oral Surgeons, and ENT for my mouth. No one has an answer or really knows what to do. I have been advised to have extensive gum grafts, braces or do nothing. I am leary of gum grafts, super expensive and heard painful. Plus whatever is causing this, it has not stopped and I don't see a gum graft taking.

My mouth is sore most of the time, eating is more like a chore now. I eat alot of softer foods. Plus now I notice alot of plaque building up fast (as I get cleanings every 6 months). My mouth gets super dry at night and I wake up with a gross taste and feeling in my mouth that I never had before. I sleep with a humidifier and do alot of biotene. Sometimes get a burning tongue but that comes and goes.

With that I have just added on more strange symptoms over the past year and nothing goes away. My eyes are dry and diagnosed with inflamed eyelids and pinguecula (yellow spots in my eyes). Fatigue, creeking joints/back and neck, ringing in one of my ears, hair and skin thinning and dry, hard time gaining weight (I am only 110 lbs I was at a 118lb before all of this started)

So overall I have been to Primary, Rheumatologist, Endo, ENT, Dentists, Oral Surgeon, and Perio's with no answers. It gets very depressing and I have really bad days.

Also, I am so, so happy that you are getting tons of support. I imagine it is a critical part of the healing process.

Thank you, Cr3ativegirl, email sent!

Haley,

I am so sorry you are having so many issues with your teeth. I am not a doctor, but have you tested for Sjogrens, an autoimmune disease? I have actually read evidence that most autoimmune diseases are actually caused by Lyme anyway, so glad you are getting tested.