The difficult patient. This is the patient I keep seeing lately. This a definite cohort with many similar features. The telltale signs of coinfection, Babesia and Bartonella are there. It should be simple, but it’s not. Every effort to treat is met with intolerable reactions. Nothing is tolerated.
Patient I saw today. She is a woman in her 20s who has likely had congenital Lyme. She had developmental delays and sensory integration problems which were treated successfully with therapy in childhood. She had cognitive processing issues and was otherwise GT. This has persisted.
I have been treating her for 18 months. Before me she saw every Lyme doctor in the community. She likes me because I treat more things and have helped her the most. She was bed-ridden and housebound for years. She is out of bed, out of the house and able to take some classes at community college.
Fatigue and collapse. This has improved. She suffers with longstanding POTS secondary to autonomic dysfunction which was not well managed. I find this to be “low hanging fruit” and straightforward to manage. Florinef, Midodrine, antidepressant, stimulants and others as needed. Still discussion of stimulants below.
I diagnosed MCAS (mast cell activation syndrome). This was something new. Treatment has made a big difference. Again, this can be relatively easy to treat (in most cases). I have discussed treatment elsewhere. Diet is important.
We are addressing other peripheral issues: mold exposure, methylation defect etc. Not as helpful as advertised by some.
The real core issue, I think, is autoimmune encephalitis. The horrific reactions these patients have when therapies for Babesia and Bartonella are introduced are not Herxheimer reaction. It is a huge mistake to keep pushing a particular therapy with the belief there will be a rainbow on the other side of the mountain. It is not going to happen.
Treating these infections intensely stirs up the underlying autoimmune pathology.
For this patient and others in a same or similar boat, pushing any Babesia therapy has led to depression and even suicidal ideation. Pushing Bartonella therapy is equally disastrous.
Objective tests may provide clues: GAD-65 aby may be elevated; Cunningham panel show neuro-autoantibodies, especially against dopamine receptors and SPECT scans are abnormal with diffuse hypoperfusion of cortical and deeper areas of the brain.
I don’t recommend spending a lot of money on these tests if not covered by insurance.
The collective experience of most patients: alternative therapies including chelation for ostensible heavy metal toxicity have not helped.
Experience with hyperbaric oxygen has been disappointing. Somewhat helpful, not amazingly so.
Steroids may work but this is a slippery slope. Moderate doses of Cortef, as in this case, help with: inflammation, POTS and possible adrenal dysfunction without causing excessive immunosuppression.
This patient has daily low-grade fevers – about 100.5, night sweats, air hunger, depression, mood swings, irritability and purple stretch marks. Of course, she also has malaise, poor sleep, joint pain and a host of other symptoms.
Despite all this, she is functioning better than she has in years.
This 21-year-old takes a very long list of meds.
IVIG helps in some cases. She will never get approved. Some patients have experienced vast improvement with IVIG. Not always a panacea, IVIG can be incredibly effective when available. It has to be dosed appropriately.
IVIG is dose 1.5 – 2 gm/kg. It may take 6-9 months before improvements are seen.
Generally, I think treating Babesia before Bartonella is best. But this is not always the case. Running through an army of Babesia meds: artemisinin, Mepron, Daraprim and others, we found she tolerates Cryptolepis best. We are trying this slowly. Daraprim recently caused a severe dip in her depression. I am promoting Babesia therapy because I think it is behind the fevers.
Bartonella could also be causing the fevers. A word about Rifampin, Mycobutin: Reactions to these meds can be beyond horrible. High fevers are common along with severe psychiatric symptoms. Stop immediately. I don’t think it’s an allergic reaction. It happens too often to be a drug reaction. And I don’t think it’s a Herxheimer reaction. I think the drugs elicit a severe autoimmune response. Sometimes, the potent anti-bartonella drug, gentamycin, will be well tolerated. I don't know why.
This brings us around to IV antibiotic therapy. Sometimes IV meds are better tolerated.
Sometimes, IV Rocephin, hitting Borrelia hard, seems to quiet the entire process down and allow other therapies to proceed. Rocephin has immunomodulatory effects n the brain, apart from it germ killing property. I don’t think we know the whole story but we know the drug reduces the toxic effect of the neurotransmitter, glutamate which is promoted by an accumulation of brain toxins which are very slow to exit through the blood brain barrier.
Another important therapy is addressing neurotransmitter imbalances.
Many patients have GABA deficits. They may or may not have GAD-65 antibodies. These patients may benefit from benzodiazepines and gabapentin. Worries about addiction may be unwarranted. In addition, these drugs are excellent mast cell stabilizers, if this is part of the equation.
Patients have antibodies which attack dopamine receptors and become relatively dopamine deficient. The use of dopamine agonists such as Ritalin, Adderall can be very helpful. Many, or most patients have executive function issues ameliorated by these drugs. Crashes described by many can be managed when the meds are dosed properly.
Patients have been to specialist al around the east coast, some are Lyme/bartonella friendly. There is a definite bottleneck without a clear path. We are all missing something. Be careful before considering immunosuppressive therapy. IV Rituximab has been very helpful, in at least one patient, who receives other therapies described above.
For now, we chip away, celebrate our successes and stay the course.
I live in Maine. I need to find a Lyme clinician that will work me up neurologically and takes Medicare. I have symptoms ranging from seizures to tics and other manifestations. Every neurologist I have seen states they are psychological. My WB was positive ..3 bands strongly positive and 1 IND. The Bart FSH was negative in 2013 and I may repeat this shortly. I need resolution. My family is starting to doubt my diagnosis. Please help me find someone! Thanks
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