posted
What Every LLMD Should know about Pseudotumor Cerebri:
The Not-So-Benign Intracranial Hypertension
by Dawn Irons
Treating the Lyme disease complex of Borrelia Burgdorferi, and its myriad of co-infections, has about as many twists and turns as an Olympic gymnast. Lyme literate medical doctors (LLMDs) and professionals know how difficult it is to treat the Lyme bacteria in its many forms: the spirochete, the cyst form, and the cell wall deficient form. It is a delicate balancing act.
The symptoms of Lyme disease are so vast that it has been called ``The Great Imitator'' since it mimics many other diseases such as ALS, Lupus, Multiple Sclerosis, Parkinson's, Autism and Alzheimers. Some of the more vague symptoms like extreme fatigue, frequent headaches, tinnitus, and eye floaters are often hard to tag down, and many times it is just assumed to be part of the irritating symptoms of the disease. But there may be something more to these symptoms than meet the eye.
The following information is something that every LLMD needs to understand and consider as they treat their patients. Several medical journals from Neurology to the journal of the American Board and Family Medicine have published research showing that doxycycline and minocycline, which are usually the first line of defense for antibiotic treatment of Lyme disease, can cause a fluid build up behind the optic nerve. This fluid build up can cause the optic nerve to swell, and if it is not treated and resolved, this can lead to permanent blindness. This condition is called Pseudotumor Cerebri (PTC), or benign intracranial hypertension. The word benign can be very misleading, in that permanent blindness is not really a benign issue, and one that can be avoided.
So knowing that the first line of defense in treating Lyme disease, the tetracycline drugs, is known to be a cause of this problem, one should look at other risk factors concerning PTC to see if whether doxycycline and minocycline are really the best option for treating certain patients with other risk factors.
PTC is primarily found in women in of childbearing years. There is also a trend to see this condition more commonly in overweight people. Men are not exempt from this problem, neither are people of normal weight. Children have been diagnosed as well. It has been diagnosed across the board in all kinds of people.
If a Lyme disease patient is experiencing frequent headaches, migraine headaches, pressure behind the eyes, stiff neck, blurred or double vision, floaters in the eyes, swooshing sound in the ear, backache and extreme fatigue it would be advisable to consider ordering an MRI. Often times the MRI can reveal a fluid build up behind the optic nerve, but not always. A lumbar puncture, though much more invasive, can bring a definitive diagnosis of PTC.
For the sake of prevention, LLMDs should not prescribe the tetracycline drugs to patients that are overweight. Other antibiotic options should be considered in light of the risk factors for PTC. Diagnosing and treating Lyme disease is difficult enough, and long-term antibiotic use is not without certain risks. With the constant scrutiny of our LLMDs, we need to do all we can to educate ourselves, and fellow medical professionals, of this potential problem with what would normally be our first line of defense in treating Lyme disease.
Posts: 222 | From USA | Registered: Apr 2006
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Lumbar puncture: In cases of cranioneuropathy, it is controversial whether all patients require lumbar puncture before treatment.
Occasionally Lyme disease presents as pseudotumor cerebri; an opening pressure is essential for diagnosis.
Currently, in most patients with isolated Bell palsy and no associated signs of aseptic meningitis, most physicians do not perform a lumbar puncture. For most other patients with cranioneuropathies and suspected Lyme disease, a lumbar puncture should be performed; CSF pleocytosis leads to treatment as indicated for CNS Lyme disease.
Obtain a CT scan or MRI before the lumbar puncture if increased intracranial pressure or mass lesion is suspected. Occasionally, Lyme disease presents as pseudotumor with frank papilledema; imaging should be done prior to LP in these cases.
These are the highlights...there were over 820 hits on google when I searched for Lyme Disease, Pseudotumor Cerebri, doxycycline
Kind of blows my mind that there is so much info on this! I just assumed all my symptoms were lyme...but look at the pTC symptoms...they are lyme-like! This could be a very dangerous situation if LLMDs are not made aware of this connection!
Posts: 222 | From USA | Registered: Apr 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Pseudotumor Cerebri is also specifically associated with North American PEDIATRIC Lyme disease- what every parent of a Lymie should know!!! Children with PTC should not go on PLANES or ROLLERCOASTERS!!!!!!!!!!! If I remember right- *************************************
1: Steenhoff AP, Smith MJ, Shah SS, Coffin SE.
Neuroborreliosis with progression from pseudotumor cerebri to aseptic meningitis.
Pediatr Infect Dis J. 2006 Jan;25(1):91-2. PMID: 16395117
2: Nord JA, Karter D. Related Articles, Links
Lyme disease complicated with pseudotumor cerebri.
Pseudotumor cerebri and Lyme disease: a new association.
J Pediatr. 1985 Dec;107(6):931-3. No abstract available. PMID: 4067752
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I have the frequent headaches, migraine headaches, sometimes pressure behind the eyes, stiff neck, swooshing sound in the ear (more like pulsing), and backache.
I'm not on antibiotics yet, though. Should I still be concerned?
Would I be able to tell my LLMD that I don't want to take Terta, or any of the drugs associated with PTC?
Posts: 64 | From PA | Registered: Mar 2007
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The pressure behind the eye is due to the pressure buildup behind the optic nerve.
The pulsing sound in your ear is called Pulsing Tinnitus--also a huge PTC red flag warning.
You would definitely need to abstain from the tetracycline drugs!
I would request a spinal tap to run in/out the PTC as a secondary problem to your Lyme. PTC untreated can cause permanent blindness.
A normal opening pressure in a spinal tap should be between 100-200...mine was over 300.
The links someone posted above was rather eye opening for me as well concerning pediatric lyme!
My daughter was just admitted to the ICU last month with "Aseptic viral meningitis with encephalitis".
She has never been dx'd with Lyme, but both me and her dad are positive.
So when we requested they do a LYME test on her in the hospital--they refused!
As soon as she was released we took her out of state to our LLMD and are now awaiting IgeneX results.
She has suffered greatly with headaches over the last year. We have had her vision tested--fine. So now I am wondering if she could possible have had Lyme all along, from birth, and this battle with meningitis kicked it out of a dormant state...
I now wonder if the headaches are PTC related.
They did a spinal tap on her at the hospital, but there was no where on the lab reports measuring an opening pressure. That may be due to the ER nature of the TAP and they were just trying to find out what kind of infection she was dealing with and did not care to report opening pressures.
I get sooooo overwhelmed with all the "what ifs".
The LLMD put her on doxy preventatively...so now I wonder if she should take these or not.
WHY do we have to know and research more than the docs just to keep our kids well? I feel like we alsways have to stay one step ahead of the game!
I need a nap! :-(
Dawn
Posts: 222 | From USA | Registered: Apr 2006
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Should I ask my LLMD for the spinal tap when I see her?
Could I get it even without having taken any tetra drugs?
Robin
Posts: 64 | From PA | Registered: Mar 2007
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Dawn, I get this with Doxy at a small dose. I had taken Doryx and Tetra at earlier times in treatment and didn't have the same effect. (I think the Doryx being time-released made a big difference.) Although neither had any benefit, at all, to me.
My reaction the last time was to 100 mg of doxy for 3 days. I am around 150# so by all rights should have taken 300 mgs. Clearly that was never gonna happen.
I stopped for a few days for it to clear and tried 50 for a day and then a day of 25 mgs. Same thing.
If your daughter was going to try the Doxy I would only give a tiny, tiny dose and see if it brings on a headache. When I stopped taking it it cleared quickly.
You might want to call the LLMD and pose the question if she should try it at all. As I was typing I realized I might try that on myself but would be very hesitant to try it on a child.
Other ABX bring on head pressure for me but not so intensely or quickly. On the Doxy I was seing alternating yellow and purple. Also the top of my head was pulsing ready to explode.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
one of my best friends has just been diagnosed with PTC.
i never thought of a possible connection with lyme. do you think she should be tested for lyme as well?
(she has no other symptoms except those commonly associated with PTC)
posted
I wanted to add that when I was having a constant headache last month, my regular doctor sent me for a CT Scan and it was normal. Would this show up on CT Scan or just MRI and Spinal Tap?
Posts: 64 | From PA | Registered: Mar 2007
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posted
Wow guys, you pose some GOOD questions...and some I could only venture a GUESS at...so take my ponderings with a grain of salt.
Can one get PTC without taking tetracycline drugs: YES. It is it's own entity apart from Lyme. The reason it is sooooo common in Lyme disease is due to the later discovery that the tetracycline drugs can also cause this buildup of fluid/pressure in the brain-spine.
I knew I had been feeling extra bad, but I just wrote it off to Lyme symptoms: headaches, visual disturbances, extreme fatigue, brain fog...
Come to find out those are all PTC symptoms too.
When they took the fluid off during the spinal tap, afterwards for months I felt soooo much better, more clear headed and less pain.
Since then the pressure has built back up again...but not near as bad.
I do take diamox, but not faithfully. My life is so "on the go" that I dont like taking a diuretic while driving and being out and about.
But I am quick to take it when I feel a pressure headache coming on!
The itneresting thing with my case is that when I was diagnosed with PTC...it was quite by accident. My LLMD wanted an MRI to compare with teh one I had 3 years earlier...to see if there lesions, etc that would explain the neurological problems.
All that showed up was a fluid build up behind the optic nerve--which is not what they were expecting.
So off to the spinal tap. I was not even having regular headaches at that time. In fact, I had only really had 2 headaches in the prior 6 months (they were doozies with vomiting, etc)...but other than that, nothing a tylenol couldnt take care of!
So to find my opening pressure at 300 (when normal is 100-200)was eye opening...especially considering this can cause permanent blindness if not treated.
I would never have been sent for a spinal tap had it not showed up on the MRI...so I would at least ask your doctor to order an MRI because this is a concern for you with your symptoms.
I'd ask for the MRI first. Then if there is a fluid buildup noticible there, go for the spinal tap too.
I am just too wimpy to get a spinal tap if it is not indicated on the MRI....but some docs may feel a ST is cheaper than an MRI...and if you have to get a ST to fully dx PTC may as well just start there. I dont know....
I am convinced there are many cases of UNdiagnosed PTC within the Lyme community because most are writing off the symptoms as being typical lyme.
Headaches are a trademark of lymies....but there could be a REASON for that! If Lymies are taking tetracyclines, it could be a secondary case of PTC causing the headaches.
There is a yahoo group about PTC, if you want to look it up. I find it helpful.
Dawn
Posts: 222 | From USA | Registered: Apr 2006
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I looked for that group on Yahoo and when I joined, it looked like all spam. I think I may have joined the wrong one Posts: 64 | From PA | Registered: Mar 2007
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posted
My kids have had constant, severe headaches since 1999. They have both been diagnosed with PTC or intracranial hypertension. PTC is a very complex and can be as hard to treat as chronic Lyme and co-infections.
It's hard to find a good neurologist to treat PTC. My kids have seen many neurologists will very little help. We have recently found an out-of-state neurosurgeon that we like.
Not all people with PTC have the eye problems. My kids do not.
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