Swelling, Pain, Nerve Involvement & Vessel Damage

Patient with CHRONIC Lyme, Babesiosis, Bartonella and other tick borne diseases.

HISTORY- September 18, 2016- Patient with thirty year history of originally misdiagnosed and inadequately treated tick borne diseases. Positive tests from three commercial labs for Bartonella henselae, Bartonella quintana, Bartonella elizabethae, Borrelia burgdorferi, Ehrlichiosis, Rocky Mountain Spotted Fever, Anaplasmosis, Histoplasmosis (CSF), Babesia microti, Babesia duncani, Parvo B-19 Virus and Epstein Barr Virus. Bitten by ticks on the Del-Mar-Va peninsula- USA.

Prior to this date, patient reported two weeks of random, wide spread pin-like pain developed in both feet— eventually with the same painful sensation developing in both hands. Two more weeks passed with symptoms continuing. There was no edema in feet, legs or else where.

Patient suddenly began experiencing very itchy, burning, extremely painful palms (both hands) with painful sensations extending intermittently into a few fingers on both hands.

Skin on palms and fingers blanched with slight pressure and hands were very sensitive to touch. Reddish discoloration along peripheral surfaces of hands, on/off swelling (sometimes all over or in "pouch-like" spots) and extreme itching sensations were prominent and continued- not relieved with anti-itch creams. Worse at night.

*No new injuries, illnesses, soaps or chemical products, dietary items or medications introduced.

One week later the typical “Bartonella-like”, bottom-of-feet severe pain was occurring only in palms of both hands. Feet no longer experienced symptoms. On September 17, 2016 sudden swelling and additional pain, burning and redness had developed in both hands within several hours. The following day, beneath the visible skin layer on the right palm a painful, firm, quarter-sized, disc shaped area developed. (Comparing it to a single large fish scale in hardness, color and size would be accurate.)

Within hours a small dark grey, wrinkled tube-shaped membrane (blood vessel?) began cracking open the skin and protruding from the skin where swelling was most prominent- near the base of the palm. Severe Bartonella-like pain in both hands continued. Within 2-3 hours the palm of the right hand...

A few hours before the right hand became more involved, both hands had been exposed to on/off cool rinse water while salad was being prepared. Those few rinses in cool water spread over two hours (no washing dishes, no submersions of hands in water) caused hands and finger surfaces to wrinkle as if hands had been immersed in water for hours.

Skin on hands became rubbery-feeling, pale, loose and appeared to be missing underlying collagen or fatty layers, resulting in an exaggerated wrinkled skin appearance. This symptom is a fairly normal occurrence since Lyme ACA was first diagnosed in this patient- progressively becoming worse.

Patient dried hands thoroughly and kept hands dry from that point forward. It was at least 3 hours before the wrinkled skin reverted to an almost normal appearance and the above complication (pictured above) began appearing.

September 19, 2016- Swelling was eventually reduced with repeated applications of ice over a 12 hour period. During this time the ring finger of the left hand (below first finger joint and hand) began swelling more than other areas causing additional pain and concern. Swelling and mild pain in the lower ring finger continued for 24+ hours, but did not become worse.

September 21, 2016- Pin-prick sensations have since subsided in both hands, and swelling has mostly disappeared along with most of the severe “Bartonella- like” foot pain in both hands.

https://sites.google.com/site/marylandlyme/symptoms-information/aca--acrodermatitis-chronicum-atrophicans/aca-swelling-vessel-damage-nerve-involvement

ASK THE EXPERTS!

Response from Dr. Joseph Burrascano, Jr. in NY

I passed on the case history to a world-class Dermatologist friend, and this is his response:

Looks like a vasculitis set off by the infection. The skin findings are not specific to any one organism. Very interesting you cultured Bartonella!

Response from Dr. Ed Breitschwerdt in NC

Dr. Robert Mozayeni, with whom I have collaborated for several years, believes that this is a manifestation of Bartonella-induced small vessel disease and localized ischemia. This hypothesis seems to make sense, as the burning sensation tends to fluctuate in duration and severity.

Alternatively, there have been a few case reports in which Bartonella has been associated with Gullian Barre Syndrome, so the burning and pain could be the result of a sensory neuropathy, rather then a motor neuropathy associates with GB syndrome.

Based upon our publications, only a subset of Bartonella bactermic patients reported the burning sensation, most often in the feet, at times involving the hands and at times both. We published a review in Neuroparasitological Reviews which you might find of interest. As Bartonella is not yet well recognized or accepted as a cause of persistent intravascular infections in immunocompetent people, there has been minimal research directed at neuropathogenesis.

Bartonella article- http://www.ashdin.com/journals/jnp/235640.pdf

Response from Dr. Joseph Burrascano, Jr. in NY

I agree with Dr. Breitschwerdt. Vascular insufficiency of small blood vessels can also result in inadequate blood supply to the peripheral nerves themselves, directly leading to local neurological symptoms.

Clinical hint- look for loss of hair just above the ankles (looks like the person wore tight socks which caused the hair to be rubbed away). If there is hair on the legs but not distally, and especially if there is still hair on the feet/toes, with preserved pedal pulses, then small vessel insufficiency is assured. Dr. B

CLICK ON PHOTOS TO ENLARGE

Picture showing loss of hair on lower legs and around ankles.

Dr. Burrascano explained the reason for it in his response above.

Response from Dr. Ed Breitschwerdt in NC

To be clear, Dr. Sontakke, Dr. Hopkins and I decided to generate that review to emphasize the spectrum of neurological abnormalities that have been reported in recent years in the literature, most often in association with a recent or prior diagnosis of Cat Scratch Disease.

As our research, and more recently research from other investigators, indicates that Bartonella bacteremia can persist in immunocompetent humans for months, years and perhaps decades, without an obvious premonitory history of cat scratch disease (fever, cat scratch and lymphadenopathy), one critically important question to be answered is how often does neurobartonellosis occur in the absence of cat exposure, fever or lymphadenopathy.

Obviously, among many other medically important questions is the neuropathogenesis, which I would predict will be mufti-factorial and complex.

Ed Breitschwerdt DVM

NCSU-CVM

Bartonella article- http://www.ashdin.com/journals/jnp/235640.pdf

Question from a Lyme treating doctor

I'm wondering if you have a recommendation for treating Bartonella in a pt who's unable to tolerate oral Clarithromycin and Rifabutin (nausea/coming). The pt is asking for IV meds... I'd appreciate your thoughts.

Response from Dr. Kenneth Liegner in NY

Mino or DCN or azithro + rifampin, all IV if patient really cannot take any P.O.

Ken

Still, as far as I know no 'silver bullet' for bart. It has been said IV genta is most effective agent for bart but I've never used it for that indication.

Response from Dr. Joseph Burrascano, Jr. in NY

"Shin splints" after walking can have several causes, so unfortunately without more details i am afraid i cannot be too helpful. Can be large vessel disease, neurologic, magnesium and or calcium issues, etc. Nasty dosease....

Response from Dr. Joseph Burrascano, Jr. in NY

I critically reviewed the literature on treating Bart and it is clear that for advanced disease, genta is really needed as part of the regimen. However, genta does not cross the blood brain barrier so it should never be used alone.

Rifampin is a key ingredient but it is static and not cidal so another med is needed. Doxy is weak, but while the macrolides and fluoroquinolones can do better, both can have or develop resistance, and a macrolide plus genta makes me worry about the ears.

Cephalosporins work great for the non-intracellular bart and therefore can synergize treatment.

So.... Difficult infection to treat! Must choose carefully and thoughtfully and follow the patient closely. But boy, what a wonderful improvement you can get if you get it right! Definitely worth the effort. Dr. B

Joseph J. Burrascano Jr. M. D.

Response from Lisa T.

What I learned from Dr. Breitschwerdt and Dr. Mozayeni's webinar, is there are two forms of Bartonella infections. The frontal acute rapid replication, and the stealth chronic slow replicating form. Bartonella has a dermal phase and a vascular phase.

Dr. Breitschwerdt Webinar- https://www.youtube.com/watch?v=mLK48ecsn-s

The chronic form will respond to other antibiotics, but there is a high rate of relapse. They found the most successful way to treat this form of infection is 30 days of clarithromycin and months of Rifampin or Rifabutin. Dr. Mozayeni also does Cytochrome P450 tests to identify patients with 3A4/adrenal crisis risk, which I mentioned is important for CLD patients, especially with the high rate of mast cell in them. I have the notes from the webinar, should anyone want to read them. You thought fleas were the only way of transmission! Oy!

So my own case study of Bartonella... In Oct of 2014, in hindsight, we believe I suffered a mast cell Kounis Syndrome from a relapsed Bartonella henselae infection, which was initially diagnosed in 2002. I was also test positive for Lyme disease, Mycoplasma pneumoniae and active EBV.

My relapsed Bartonella symptoms...I felt like my nerves were hypersensitive, brain processing speed was off, a Pannus wrist cyst, endocarditis, muscle/bone pain, fatigue, visual problems, POTS, liver enzymes were slightly elevated, "MS like". All these symptoms with exception of one maybe are also the symptoms of mast cell activation and Lyme disease. What a challenge for you physicians!!

This 2014 event catapulted me into daily mast cell Grade 3 & 4 anaphylaxis. I was diagnosed with mast cell in August of 2015. Then in Feb of 2016, thanks to MD Anderson, I was confirmed thru a bone marrow biopsy to have the rare mast cell form, Indolent Systemic Mastocytosis. Months later thru genetic testing, Ehlers-Danlos Syndrome.

In treating my bartonella the second round, I was on clarithromycin for 30 days, and Rifampin for 7 months. I had my bone marrow aspiration sent to Galaxy for their superior enriched culture method. It came back negative, and I'm still crossing my fingers it's gone.

By the way, Dr. Breitschwerdt, my pain doctor did cytochrome testing, and I am not a good metabolizer of 3A4, 3A5 and VKORC1. It was by the grace of God I did well on the rifampin. ;-)

Best wishes,

Lisa

UPDATE October 2018- Quote from Bartonella researcher- "It is increasingly obvious that Bartonella can induce enough vascular inflammation in a subset of patients that a pathologist will call the lesions "vasculitis". In most instances, subtle vascular injury is occurring, but a biopsy would not support a pathological diagnosis of vasculitis- lack of sensitivity." Source https://www.ncbi.nlm.nih.gov/pubmed/30318847

Response from a mother of a patient

Here are some photos from a patient who has Bartonella and is on the Zhang protocol. Foot pain was in the picture early on, but no longer a problem. (And Dr. M, this patient opted for the Zhang treatment because tolerating antibiotics was difficult). The PA at Zhang told the patient to expect outbreaks as the pathogens left the body through the largest organ, the skin.

Patient had classic Bartonella striae prior to treatment.

During treatment, here is a scratch which appeared under the chin. The PA said that was the scratch indicative of cat scratch fever.

Below- Here is one of many sores which have opened and appeared during treatment. This is on an elbow. They were more common on the patient's legs. When they appeared they were treated with an antibiotic ointment and covered.

Below- Here are some of the sores (ankle Dr. B.!) that have scarred over.

Below- And here are the striae now after two years of treatment. These were [incorrectly] called stretch marks by the dermatologist.

Response from Lisa T.

I can't take most antibiotics. They cause Grade 3 & 4 anaphylaxis. When I had my Bartonella relapse, I was initially placed on levoquin. Initially the infection responded to the drug, but as Dr. Mozayeni pointed out, relapse is common with the stealth form and that's exactly what happened to me. While on levoquin, I was instructed to take a high dose of magnesium L threonate while on the drug, and instructed to not lift or exercise. The magnesium was to counter the tendon issue, and it worked in me. I was on the drug for 4 months with no issues.

That said, if you have very little choice in tolerated antibiotics, and you choose the fluoroquinolones, using a high dose of magnesium L Threonate to counter the effects is an option.

Lisa

Part 2

October 8, 2016

Patient reports it is happening once again, even before the 1st episode was cleared. The second episode was proceeded by several days of extremely painful hands/palms with burning feelings and swelling on/off. Hands have been too tender to touch a steering wheel, pick up a cup to get a drink, grasp anything even lightly, or to put hands under running water. See whitish hard disc forming under the skin just to the left of the original occurrence and a vessel beginning to come to the surface. By applying an ice pack the swelling was reduced and the vessel didn't break through the skin this time.

Part 3

October 12, 2016

Nothing used to treat hand, and this appeared 2 days prior to photo (see 2 photos below). A blister-like film developed over the 1st affected spot. No pain, no additional trauma, and no other symptoms.

Part 4

October 14, 2016

Left hand and wrist is showing signs of involvement. Swelling in some areas and broken/damaged vessel in wrist.

Part 5

October 16, 2016

Four times in less than 4 weeks. Severe pain, swelling, hard disc under outer layer of skin and damaged blood vessel.

Interesting Note- As reported by Dr. Breitschwerdt in his webinar program, the adrenal can be seriously affected and tests should be performed. Patient had noticed a severe drop in energy levels several months prior to this incident- nearly bed bound all day and night. Tests were run and the adrenals were found to be completely exhausted. Adaptocrine (K-2) from Apex Energetics was prescribed.

Within a week's time the Adaptocrine treatment (2 lg. pills per day) showed some improvements in energy levels for the patient. Unfortunately, after 4 weeks patient reported excessive nervousness and anxiety, with slight tremors. Adaptocrine was discontinued for several weeks and symptoms eventually disappeared. Patient started back on the Adaptocrine at a lower dose (one per day). It has not improved energy levels significantly, however the treatment will continue for at least another month to determine if it will help.

UPDATE- October 17, 2016- Treatment Issues

XXX suggested to apply ice or cold packs to the hands for immediate pain relief. Patient reports it was quite helpful in reducing swelling and some of the major pain episodes. It also may have prevented more vessels from protruding though the skin by applying it to parts of the hand that appeared to be worsening ("nip it in the bud").

UPDATE- October 17, 2016- Local NP changed the patients diet, which was already a quite healthy one, to a very strict non-inflammatory diet. Patient reports starting diet immediately, although admits "it wasn't any fun". Patient is unable to cook full meals due to depleted energy levels and food choices were very limited with this diet. Patient ate 2 meals a day consisting of a cup of dry white rice and/or a cup of collard greens and/or raw spinach and canned butter beans or chick peas for the next 5 days. Plans are to expand the selection ASAP.

Pain Relief- As an experiment in an attempt to reduce the pain, the NP placed CBD oil on one palm and a CBD salve on the other.

Patient reports the salve was rather sticky and didn't absorb as well or as quickly; however, it appeared to reduce swelling within a few minutes and noticeably helped to reduce the pain.

The hand with CBD oil felt a little more of a reduction in pain and seemed to absorb more quickly. The practitioner insisted if CBD oil was to be purchased by the patient that it be from this site only (no conflicts of interest or relationship) for quality assurance.

~ ~ ~

UPDATE- October 20, 2016- Based on the "EXPERTS" input and patient's limitations, patient is to start with Biaxin in low doses- 250 mg. per day with 90 day RX (due to patients difficulty with clearing toxins and MTHFR issues). The medication is currently awaiting pick up at the pharmacy. [Added- that is what was believed at the time- the RX was delayed.]

UPDATE- December 3, 2016- Having fought the insurer to get the necessary medication for weeks (clarithromycin) the prescription medication was finally started. Diet was changed to an anti-inflammatory diet. (Patient reports anything that looks good, smells good or you think you can't live without is NOT on the diet.)

Five supplements were started to address the inflammation. Vitamin C, Vitamin E, Bromelain, Quercetin and Wobenzyme. Inflammation was greatly reduced immediately and patient continues to take them for that reason. If one day is missed patient reports the itching, swelling and inflammation increases.

UPDATE- December 26, 2016- Patient reports feeling better and has experienced a reduction in the number of incidents described above. Energy is slowly returning. Diet still adhered to on a daily basis. Supplements continue to be taken on a daily basis. Due to MTHFR and other issues, patient takes clarithromycin 5 days a week with a 2 day break on the weekend for reducing herxes and clearing toxins.

UPDATE- March 9, 2017- Patient stopped Biaxin two months earlier. No recurrences until one day was skipped taking anti-inflammatory supplements and condition returned. Left wrist.

UPDATE- March 18, 2017- For the past two days patient has experienced the same burning, painful & intense itching from the top of the neck (back side) to just below the top of the head, mostly at night. It is as if a circle was drawn where the itching/burning occurs- from the base of the skull upward and outward, reaching almost to the back of both ears to the top of the head. For three days prior to the start of the intense itching episode patient noticed vision was unusually blurry, mostly in the right eye. Relapse?

UPDATE- March 22, 2017- For the first time another vessel with damage appears on the outer surface of the R hand (as opposed to the inside palm areas or inner wrists).

Update- May 23, 2017- Patient continues to have minor to moderate episodes of intense itching, pain, swelling, hard lumps appearing and tenderness in one or both hands that lasts for several days at a time. It is generally followed by a broken or leaky blood vessel appearing if area around the site is bruised.

Has not been on antibiotics for several months. Diet remains the same. Reduction of supplements due to cost, difficulty swallowing, and the fact patient is "tired of taking so many pills every day". New spot approximately 2 inches long by 1/2 inch wide on left hand (below), mid to lower palm area. It seems to swell in-between natural "palm lines". Area affected and lower ring finger (knuckle to hand) is swollen and painful mostly near visibly affected area, but entire hand is also tender, painful and slightly swollen. The swollen area on the palm is hard to the touch. It changes color from bright white to dark pink/red.

Click on Photo To Enlarge

May 24, 2017- Series of six photos showing beginning to end of latest episode- left hand, lower ring finger and outside hand below pinky finger. Vessel damage, swelling and extreme pain. Click Here. Scroll down until you see the section with 6 hand/finger photos.

December 2017- Continuing to cause symptoms (blood vessel starting to protrude from skin) without antibiotics and anti-inflammatories (supplements).

Ask An Expert- The above comments were provided by health care professionals with experience treating Lyme patients, and patient advocates who have also been assisting Lyme and tick borne disease patients. Thanks to all of them for contributing to this project in an effort to help educate others and relieve the suffering.

Last Update- October 2018

Lucy Barnes

AfterTheBite@gmail.com