I have so many great cases. I can't write about as many as I would like. This case is very alarming to me. I will summarize its salient features. Her treatment for purposes of this discussion started at age 15. She had knee pain since age 11 which was getting worse. She had not sought care for the knee pain. At age 11 she came to the office with mono-articular arthritis of one knee. A Lyme test was CDC positive. She was treated with two weeks of Ceftin- and then lost to follow up.(She was treated based on guidelines as they were understood at that time.) Shortly before the first visit now, she noted a bulls eye rash on her leg. It was noted that she had years of fatigue and neuropathy symptoms. An associate in my office had diagnosed "ADHD" two years prior to this visit and prescribed Adderall with a positive result.
Her standard Lyme WB showed 13/13 positive bands. Her C6 peptide antibody was through the roof. She was treated with 4 months of oral antibiotics without improvement; in fact she got worse. She developed a syndrome of numbness of both legs below the knees. (I have seen this exact syndrome on several other occasions.) She was started on IV Rocephin. She stayed on this for only 30 days. It was stopped when I was out of town because of suspected PIC line infection. The numbness resolved quickly. Her memory improved. It only became clear- after the Rocephin, that she had memory problems. Sometimes you only notice something when it is no longer present. The "ADHD" was better as well. She continued to improve, dramatically on oral antibiotics- but then stopped taking everything. She went off antibiotics for about 5 months and was lost to follow up.
When she returned, finally- two months ago, Her forgetfulness had become "terrible." She had lost all of her cognitive gains. A SPECT scan showed hypoperfusion of the left frontal lobe of the cerebral cortex. She now complained of hot flashes- suggesting a possible Babesia co-infection. She was treated for Babesia and Lyme over the ensuing two months. The joint pain was better. The fatigue was a little better. The memory loss- inattention- brain fog were no better. She was/is having academic difficulties.
My plan is oral antibiotics for another month- if the cognitive deficits are not improved IV therapy will be re-instituted.
I would like to comment on the SPECT scan. It shows changes in regional blood flow patterns in the brain. Blood flow may be decreased in areas of the brain which are metabolically inactive due to toxins or other injury. The areas of the brain which show poor perfusion are diseased in a way which causes them to function poorly.
Classically, neuroborreliosis is associated with poor functioning in the frontal lobes. There may also be diffuse involvement of the temporal or parietal lobes.
The abnormality here is seen in her dominant hemisphere. So of course it would cause cognitive difficulties.
What is the finding in ADD? Frontal lobe dysfunction: the same thing. With straight ADD the abnormal scan corrects with the administration of Ritalin or a similar drug. The problem has to do with a lack of dopamine activation of neuronal pathways to the frontal lobes.
It should not be surprising that what is diagnosed as ADD may in fact be neuroborreliosis. Lyme induced "ADD" may also improve with Ritalin. It just doesn't work as well as with traditional ADD. Many "ADD" patients may be able to stop stimulant medications after successful antimicrobial therapy of their Lyme disease.
She should get better. I lectured her and parents about compliance. Aggressive therapy is critical. The consequences of ineffective therapy, long term, would be grave.
19 comments:
Forgive me, this comment is off-topic from the post.
But I have requests for 2 topics, should you ever feel like writing about them (I didn't see another way to contact you aside from posting a comment).
One is some further exposition on cytokine response in Lyme. Long before my Lyme diagnosis (and tests), one of the few pieces of bloodwork that were WAY wrong was a fairly complete cytokine panel. It indicated something was hugely wrong, but at the time, no one knew what. That panel was actually the first thing that stopped doctors from just telling me to go to therapy.
I haven't found a whole lot of info on this connection, but have seen you write about it. When I've read about Lyme and inflammation, it most often is about other types of inflammation markers (other than cytokine response).
The second request is for some more information on 'herxing'. It's a subject that confuses me. I understand the concept, but where my confusion comes in is understanding where the line is, what's reasonable. If you read Lyme boards, it's common to read people saying they 'herxed' for weeks, months, years. It's also not uncommon to read people saying they lost consciousness repeatedly or other very extreme reactions. Could this possibly be okay? It seems barbaric to me, this degree of 'you have to go through it to get well'.
I've read a number of doctors' explanations of the Herxheimer response, but have never really seen anyone talk about what the practical and safe limits of this reaction are.
I apologize if you don't take 'requests'. But you're a very active blogger, so I thought I'd ask if you'd take a request under consideration.
Past that, I appreciate your site, very much.
I have never measured cytokine levels. It seems this would be very expensive. Certain antigens cause greater immune system reactivity, such as the Lyme organism. Lyme activates the innate response- this is associated with specific cytokines. These are inflammatory- Th1 cytokines. If one were to measure cytokines there would be high levels of gamma interferon and certain interleukin molecules. I an not good at remember the specific numbers, but IL 1 and several others are produced. These internal hormone- messengers gear up the immune system to fight the perceived pathogen. They are simply markers of the immune response to some foreign antigens. They do not diagnose anything.
Herx reactions should be short lived and moderate.
If patients are worse after therapy for a prolonged period of time the doctor needs to go back to the drawing board.
I 2nd the request from Michael. These 2 topics are ones I have difficulty with as well.
One of the reasons hubby has been in treatment so long is I have been hesitant to combine multiple antibiotics and be aggressive with treatment. Actually he is finally on a 5 drug oral combo that was supposed to address Lyme, Babesia and Bartonella all at the same time.
Gradually built up the doses over 8 months. Then he crashed unexpectedly and we added in hydrocortisone and Benicar to his symptom control meds. Feel like we have made very little improvement this year even with more aggressive treatment.
Beginning with his first antibiotic -- IV Rocephin back in 2003 -- hubby has herx type reactions to almost every dose of antibiotics. If the drug is going to do anything then he has seizure-like episodes and increased tremors or myoclonus and/or dry heaves or vomiting. It can be predicted almost like clockwork -- either based on the peak dose of the med or the halflife.
Adding in very low dose Lyrica this year has helped somewhat control these herx type reactions. But a higher dose of lyrica caused very severe dystonia. None of the half a dozen other seizure meds had much effect. IV Ativan used to work for these episodes but it lost effectiveness over time. I remember stopping the IV Rocephin 1 or 2 times with almost every dose to administer IV Ativan.
I have always worried that I might cause worse neurological damage by doing aggressive treatment. Lately, my concern is more about triggering a stroke. Bad neuro episodes usually trigger transient Bell's palsy, speech difficulties (babbling nonsense) and recently headaches and eye pain.
Fortunately these episodes have decreased in frequency to a mild episode every couple of days with more severe episodes every few weeks. At least he is not having these episodes multiple times daily as happened for years.
But in some ways the episodes are more severe -- does not lose consciousness anymore or become confused, but the muscle rigors or dystonia is totally incapacitating -- lasts for hours without some sort of IV med intervention. Most recently very low dose IV Phenergan will stop these symptom attacke -- not really sure why it works except for the possible cholinergic effect.
Since insurance will not cover home health care I am the one administering all meds. ER visits in the past have been totally useless.
Not asking for medical advice. Just wondering if you have some "rules" on when to back off on meds or how to determine when more aggressive treatment is needed.
Technically hubby does not have seizures -- no seizure spikes on many EEG's.
Actually the Parkinsonian tremors that were present 24 hours a day for many months when he first got sick now only show up for an hour or so at most and some days not at all.
About this post: I'm suprised this girl could perform academically at all. Why the start and stop over the years. This is a desperate story. She is so young and being a parent myself I cannot imagine letting her stop treatment. What is her prognosis? One wonders what Lyme does to a growing body when it infects a person at a very young age. Is there any information on this; i.e. effect on CNS development, neuro and psychiatric development much less social development. We need a lot of Dr. Jones'
Lymedoc,
Thanks very much. Yes, the cytokine panel was expensive. But so were the other million tests I was having.
My inflammatory cytokines were really, truly off the charts. Many of them were nearly 20x normal levels (yes, that's TIMES, not percentage). And no, it wasn't diagnostic. But did show that something was really going on with my immune response.
The problem was,3 different specialists had 3 different theories. Immune deficiency, autoimmune issues--'atypical' Lupus, etc. And their treatment ideas were oppositional also--that is, one doctor thought I should take immunosuppressives, and the other was warning me that I had a depressed immune system as it was.
Confusing for a lay person to figure out, dueling doctors.
And also, thanks for what you said about the herx thing.
I appreciate, very much, that you responded. Happy Holidays.
Hubby is sick (Understatement of the Year).
The failure of organized medicine to address these issues is an embarrassment.
He should be in a "Lyme Center" where a team of well trained physicians can collaborate to find the most effective treatments under close supervision.
Unfortunately this is only a fantasy.
My guess is that we are missing a big piece of the puzzle.
If all those antibiotics are not working- maybe- he is being treated for the wrong thing. Or at least with the wrong drugs.
Consider sending off a blood sample to Clongen. Ask for a blood wet mount exam and a 16S DNA analysis to see if there is another bug.
It sounds like too many oral antibiotics. I know you doctor is pulling at straws.
Would he consider other IV antibiotics? I can't make any recommendations on line.
One very difficult aspect of treating complicating Lyme cases is that the physicians are isolated and have nowhere to go for help and consultation. The family can't taken on the burden of trying to figure everything out.
In truth, we doctors, despite our best efforts, are limited as well. We don't always have a good answer.
Thanks LymeMD.
Hubby is impatiently waiting for the Clongen 16S DNA sequencing results. Dr K has found the gram-negative so-called mystery bug. Since hubby has been on a total of 25 different antibiotics and antifungals in the last 5 years it will be interesting to see what the bug actually is. He was also on IV Primaxin twice which like the Rocephin helped, but improvements started fading within a week.
I totally agree that a Lyme treatment center is long overdue. We went the specialist route at one point -- were seeing a LLMD, an ACAM PCP, neurologist, gastroenterologist, pulmonologist, and chiropractor all on a regular basis. And then there were cardiology work-ups and more. But when the patient is the one who does all the coordinating and most of the docs know very little about tickborne diseases or even infectious diseases -- we didn't get very far needless to say.
with all due respect Dr a SPECT scan WILL show blood flow and uses a radiotracer. PET scans on the other hand show glucose uptake and use tracer tagged glucose!!
SPECT is useful in finding ischemic areas ( reduced blood flow), and other instances of alterd blood flow
What I wouldn't do for the existence of a lyme center. It's one of my most persistent fantasies. A very unexpected one, until I contracted this illness.
Could it possibly be more costly than the numerous specialists, batteries of tests, treatments, and loss of income that so many of us incur?
In part, it was sort of what I was addressing in the herx questions.
Sometimes, I have felt as though the best my doctor can do (and I like my doctor) is to give me meds, and basically the idea is, "take these, go home, try not to die, and after an interminable period of time, you might feel better. Or not. There's little way to measure progress until you feel better."
Yes, a treatment center is a dream. I fear I will not see it in my lifetime. At some point the number of people with this disease will just demand the attention of mainstream but I have been thinking that for a long time. What's the deal. Its like this in Europe too. The "silent" disease.
Sci-ed- thank you for the correction.
I have been confused about the differences between SPECT and PET scanning. The SPECT shows alterations in regional blood flow.
These areas of hypoferfusion are not "ischemic." This refers to tissues which have dangerously reduced blood flow, usually due to an obstructed artery, which are at risk for injury, such as a stroke. The SPCECT scan appears to be highly sensitive. It is classified as a functional imaging study, not an anatomic one. It is possible that the regional blood flow changes are primarily the result of local toxic effects causing a lowering of metabolic activity in the effected area. The decreased blood flow then becomes a secondary effect. Abnormal SPECT scans change with therapy. They do not reflect a vascular problem for the most part.
Please let me know if you disagree.
I edited the incorrect information on my blog. Thank you.
I asked this question earlier but think it got lost. In reference to the girl who has been sick for a long time, is there any information on how growing up with Chronic Lyme Disease affects neurological development, CNS development and other. Would you speculate? My daughter was in school with a girl who had to come in by wheelchair Thursdays and Fridays due to fatigue.
Other physicians and researchers have done work on the consequences of childhood Lyme infection. Many Lyme physicians have postulated that autism is related to Lyme. There are a number of Lyme literate psychiatrist who have written quite a bit about this topic.
For the most part, as is the case with most other aspects of Lyme disease, very little is known about the long term pediatric developmental consequences of chronic Lyme infection. Perhaps the physician with the most experience in this regard is Dr. Jones.
Specific knowledge in this area is outside my purview.
The problem is: When you treat chronic Lyme- you see its path of destruction in my spheres of health.
The frustration is that the vast community of physicians and would be investigators do not "believe" in chronic Lyme to start with. So it is not surprising that there is virtually no peer reviewed research to rely upon.
A Lyme center would require a collection of LLMDs. Specialists who have not been educated in this realm would be of no help, or possible counterproductive. Specifically, specialists in: immunology, infectious disease, neurology, psychiatry, psychology, rheumatology, general medicine and pediatrics could form the major constituents of a Lyme clinic. A pharmacologist would be a useful addition. I personally do not see a role for chiropracters, naturopaths and herbalists in the core group of experts. Such practitioners could have a peripheral role.
I see Lyme disease as a very serious medical illness which should first and foremost be treated by "traditional" allopathic methods. I know the word traditional can be interpreted differently, depending on where you are coming from.
The doctor in North Carolina who went through bankruptcy- I can't think of his name right now but he says that he has regrouped and now has a "Lymes Disease treatment center" I believe in N.C. Since I've heard nothing else it probably is not true but do you know anything about it? He was in the documentary "Under our Skin"
Jemsek. S.Carolina.
To the author of this blog,
I agree with you about the possibility of Bartonella being over-emphasized in TBD patients. But nonetheless, have you considered Rifampin or Levaquin for this young lady?
Perhaps her cognitive difficulties stem from Lyme, but aren't there enough Lyme patients who report success on these drugs to merit trying them in all Lyme patients that show these poor neuro-psych trends, even if bartonella is a non-issue?
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