Does anyone diagnosed with Bartonella/EBV have symptoms like these?

I am new posting here, but, for years, I have hunted the internet to find some explanation for my chronic pain symptoms.

Basically, my back from below my ribs up to my shoulders and even my neck is often rock hard and feels "stiff" and "full" to the point that it feels hard sometimes taking a full breath. The pain often extends around my ribs and is sometimes concentrated in the bra strap area (which I read on the Igenex website is a feature of Bartonella). In addition to the stiffness, the areas in my back are often red/irritated and can even feel hot to the touch: for many years, I had icepacks with me all the time to try and reduce the feeling of heat. The tenderness is often concentrated on the parts of my back where I sleep. (I am a side sleeper). For many, many years, I had bodywork done to try and loosen up my back, and in addition to general inflammation, the bodywork person and I could often small adhesions that could be broken down manually and that would make "cracking" noises. At one point, I thought that this might be Fibromyalgia, but this feature of my back issues simply made the Fibromyaglia MD raise her eyebrows.

After literally decades of trying to figure out what was wrong with my back (and health in general), it wasn't until I started reading the information on the Igenex website and some posts on this and other forums that referenced the work of Dr. M on Bartonella creating biofilms on connective and other tissue that I thought, "Finally!" I have been working with my own LLMD on Bartonella and also on reactivated EBV, which also appears to be an issue.

The weirdest new symptom is that my back has developed a very light rash (what might be called an acute generalized maculopupular rash) -- little bumps all over my back. There is no fluid in these rashes, and they are very small. Like little pimples all over my back. As my mom just went through Shingles, I really don't think that this is Shingles. My back is also very itchy after I have bodywork done and after I get out of the shower. I read that EBV can get a non-itchy rash and that you can also develop a similar-looking itchy rash if you are taking antibiotics when you have an EBV flare (which I was). However, I went off the Abx for a week, and no change.

Does anyone else have something similar? I don't get the feeling that the itchiness and the rash are symptoms of Bartonella. (I saw pictures of Bartonella rashes, and they don't look anything similar). Could it be the EBV? Or possibly even something else? My doctor often thought it might be some type of other virus (retrovirus). I figured that, with as much biofilm, as I suspect I have built up in my body over the years there could be anything living in my body! I am taking Flucanazole and other herbal anti-yeast medications, btw. In addition to this horrible, painful straitjacket feeling, I also have arthralgias in feet, knuckles, and knees; fatigue; brain fog; and poor sleep.

By the way, Bartonella was confirmed through Galaxy Diagnostics testing; EBV through repeated very high blood titers (EBV EA >40) and recent Infectolabs testing; Lyme may be there in the background, although after years of work, it hasn't tested positive, but it's probably lingering somewhere. I also have occasional relapses of SIBO/SIFO, not to mention some autoimmune issues (Hashimoto's, IC, rosacea linked to autoimmune).

Comparing symptoms is always a very tricky thing. A lot of these infections are synergistic with their symptom profiles when together, not additive - meaning someone with a Lyme and bart infection could have symptoms that don’t even match textbook description of Lyme disease or Bartonellosis.

A positive test for something is always a great direction starter - unfortunately testing is terribly inadequate to determine active infection or not. Since your positive for bart and presenting with a complex profile (as 98% of us here do..) I always encourage pursuing comprehensive treatment with a doctor who understands this. Once one infection gets outta control and a complex chronic condition develops there’s a break down on several levels - toxins, bacteria, viral, parasitic, microbiome, fungal etc.. we even have viruses living in healthy people that we haven’t identified.

Some people get luck and treat one infection and the body is able to handle the rest.. but often complex cases aren’t this simple and require building up an effort against the above areas as again testing is not adequate to find everything our body may be dealing with. See my test history below

Hi! I’m also in CA and have Hashimoto’s and have been searching for answers for over a decade as well (yay twins!).

I’m currently patiently waiting on an array of igenex results, but a recent self-ordered western blot through quest indicated I was negative for Lyme but positive for *something* (reactive 41 igg). My LLMD has a gut feeling, based on the Hashi’s and my overall symptoms, that I will test positive for at least Bartonella. This is all new to me, but I’ve been trying to mentally prepare myself to begin fighting whatever this is soon. I’m so tired of blaming my poor thyroid. So tired in general.

Anyway, the reason I decided to stop and leave a comment… I have those exact little bumps/pimples! They’re on the back of my arms primarily. They don’t hurt ever, but sometimes do itch after a hot shower or exercise. I’ve long wondered what they were but honestly don’t think about it often because they’re in a spot that’s almost impossible to see.

I have muscle and neck stiffness as well, but I also work a desk job which I always assumed was the main contributing factor.

I haven’t been tested for EBV but am now very curious. I’m happy to take a picture of the bumps if you shoot me an email! I’d be interested to hear if yours look similar.

also - note - Lyme and EBV each cause cross reactive antibodies with each other - this is documented in the scientific literature - so any positive test result for EBV in the context of suspected tick borne infection needs to be interpreted in that light

SickofbeingsickinCA,

I read your post but not everyone else’s, so forgive me if I say something redundant. I have strongly suspected bartonella (scratches, stretch marks, and striae)) but no lab confirmation. I don’t know much about EBV.

I have had similar symptoms. I had upper back pain, tightness across the ribs with the stiff feeling in my chest wall rather than my back, which affected my breathing. This was in 2015 after a respiratory infection and pre-Lyme/co diagnosis.

After months of worsening symptoms, I was sent to a pulmonologist and got the whole workup, including methacholine challenge test for asthma. Pulmonologist couldn’t find anything wrong with my lungs but gave me a Rx for double dose steroid inhaler that I used for a month. It got me about 85% recovered from those symptoms. Unfortunately, the inflammation just went down into my intestines then.

I had heat and redness and sometimes swelling but in my face instead of my back from initial onset of Lyme/co until 2015 when I started taking Nexium and Zantac. The only guess I can come up with for why that stopped it is possibly MCAS.

I did have heat in my back and chest without redness when Lyme/co symptoms began in 2009. It felt like steam coming out of my skin. Just the thought of wearing a sweater or sweatshirt made me feel like I would break out in hives. I was uncomfortable driving or leaning back in a chair because my back would get steamy hot and feel like a sunburn.

The itching after bodywork and shower could be MCAS. I have had rashes or itchiness after showers before. I have had many many skin manifestations of all sorts. I had very splotchy skin and used to get mottled purplish chicken wire all over (livedo reticularis).

Do you have any pictures of the rash/bumps that you want to post?

Not sure how long you’ve been on Fluconazole, but when I started Nystatin, I got tiny bumps all over my back that hurt and itched. It was from the yeast die-off, I believe.

I am now also very prone to heat rashes.