I have read old posts regarding Chiari and Lyme and have tons of questions. I should back up and tell me story...
In 1998, I had a bulls-eye rash, and was living in a Lyme hot bed for the summer. I went to my doctor and he said to watch and wait. Well, I was expecting to have arthritis if I truely had Lyme disease, but I had a host of other symptoms that I just attributed to lowered immunity and depression. Over the years, I have developed severe fatigue, headaches, achiness, losing my hair, etc. However, in Feburary of this year, I started having many neurological symptoms. Now they are too numerous to count, but the worst symptoms are visual disturbances, sleep problems, ringing in my ears, and neuropathic pain. After seeing about 7 different doctors and specialists, the only thing that has come out is a Chiari Malformation with a 6.6mm herniation, no syrinx, and flow intact.
My neurologist seemed to think this was simply an incidental finding, and not what is causing my symptoms. Of course I was skeptical, as chiari is often dismissed by the medical community much like lyme. However, I was refered to an Infectious Disease doctor who now states that even though ALL of my testing for Lyme is negative, I meet the clinical DX due to my history. I was told they would put me on IV antibiotics, even if the second set of test comes back negative. However, they wanted to do a spinal tap to rule out everthing else and to test my fluid in the slim chance it would come out positive. The Infectious Disease doc consulted with a neurosurgeon about the tap, and now they will not tap me. Furthermore, with their new knowledge of Chiari from the neurosurgeon, I think they are reluctant to treat me for Lyme without the tap.
I have not had chiari surgery, and really believe that this quite possibly is Lyme disease. Has anyone had a similar situation? Have you had a hard time getting a good differential diagnosis, and has antibiotic treatment reduced your symptoms? I am desparate for any info you may have. Also, do you/did you have symptoms that were not attributable to Chiari?
I have a ton of things happening that Chiari does not cause including conjunctivitus, rashes, weight gain, swollen knees, kidney problems.
Any insight is helpful!
Posted by dmc (Member # 5102) on :
yep, my sister. chiari is either from birth or accident. As our llmd said lyme can cause inflamation, no place for brain to go soooo.
sister has been on abx...mri last month showed chiari less, those symptoms no-longer evident.
Posted by CaliforniaLyme (Member # 7136) on :
at the National Insitutute of Neuro Disorders it says Chiari can be caused by infection-
What causes these malformations?
CM has several different causes. It can be caused by structural defects in the brain and spinal cord that occur during fetal development, whether caused by genetic mutations or lack of proper vitamins or nutrients in the maternal diet. This is called primary or congenital CM.
It can also be caused later in life if spinal fluid is drained excessively from the lumbar or thoracic areas of the spine either due to injury, exposure to harmful substances, or
infection.
This is called acquired or secondary CM. Primary CM is much more common than secondary CM. **********************************
I had chorea which is a crossover symptom- Chiari can appear Lymelike-
Posted by CaliforniaLyme (Member # 7136) on :
More- *********** Many persons with a Type I CM do not have symptoms and may not know they have the condition. Patients with other CM types may complain of
neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected. Symptoms may change for some patients, depending on the buildup of CSF and resulting pressure on the tissues and nerves. Adolescents and adults who have CM but no symptoms initially may, later in life, develop signs of the disorder. Infants may have symptoms from any type of CM and may have difficulty swallowing, irritability when being fed, excessive drooling, a weak cry, gagging or vomiting, arm weakness, a stiff neck, breathing problems, developmental delays, and an inability to gain weight.
Posted by Mtgirl (Member # 13278) on :
Hi Sarah,
Believe me, over the past 6 months, I have read every journal and piece of lit I could find on Chiari; it's etiology, treatment via surgery, syringomyelia, etc...
I truly believe that my symptom set is from Lyme, as I have never had Chiari symptoms before, but I did have an EM rash from a tick 9 years ago.
I have a theory about Chiari and Lyme. I'm not a doctor- and there is nothing to validate this theory but...Here are the facts: 1)Many of the symptoms of Neuroborrelia are the same as symptoms of Chiari. 2)Many of the major surgical centers that specialize in Chiari are located in the North Eastern US. 3)Only about 50% of individuals that have surgery to correct Chiari have their symptoms relieved. 4)Obviously, Chiari is picked up easily on MRIs, however, we all know that Lyme is a hard bug to catch on tests. 5)Chairi can appear Lyme-like, but Lyme can appear chiari-like, as far as the symptom constellation is concerned.
If Chiari is yet another potential symptom or condition caused by Lyme, that is freightening. There are a lot of surgeons making a killing off of the cost of Chiari surgery, and a lot of people that are having their quality of life drastically altered as a result. Antibiotics vs. Brain surgery? That is a huge issue that I have never come across addressed in the literature. There are, however, good docs looking into why their Chiari patients don't improve after surgery, even if CSF flow is intact and no syrinx is present. It is agreed on that in many cases, there is another underlying condition causing the symptoms.
Certainly, this is not to say that there are not MANY, MANY people with Chiari that simply ONLY have herniations and not bacterial infections. There are so many people that suffer from this!! Chiari is yet another condition that the medical community fails to recognize, appropriatly address, and conduct research.
I am curious how doctors have conducted differential diagnosis of these two, and what I should expect. If anyone has any info, or has this dual diagnosis, please reply or email me.
Mtgirl
PS-Sarah-thanks for your info!
[ 20. September 2007, 02:24 PM: Message edited by: Mtgirl ]
Posted by trails (Member # 1620) on :
my sister has/had chiari and had the major brain surgery in 2000. (her neck looks like frankenstein ---it is very interesting how they sewed her up!) She did MUCH better for 6 years, but has recently begun to slide back in symptoms.
Her MRI is showing new syrinx(es?).
She had lyme several years before this diag and treated it for about 2 months with orals.
but to muddy the waters more--my older sister lost her first baby to anoncephaly which is at the other end of the spectrum of neural tube defects, of which chiari malformation is considered to be in if congenital.
So congenital or lyme? for her we dont know. and will prolly never know. What matters is getting the relief you need.
you dont want to do the tap with CM. Can you get to a LLMD? They would prolly treat you with IV ABX without a tap.
Posted by CaliforniaLyme (Member # 7136) on :
Mountaingirl- I agree with everything you wrote*)! I think there is probably a lot of crossover both ways-
Posted by Lymetoo (Member # 743) on :
GO WITH YOUR GUT!!!!
Your gut is telling you it's LYME!!! What I think you need to do is find an LLMD who will treat you without a stupid spinal tap!!!
I would NEVER agree to a spinal unless my very LIFE was in immediate danger!!!
Contact me and we'll get you some names of good LLMD's in your area. You may have to travel a bit.
Well, I got a call from the Infectious Disease docs, and my final test (c6 peptide) was negative. The doctor and I are not suprised. They are still questioning whether or not to treat without a spinal tap. In the meantime, I have my first appointment with a LLMD scheduled for Oct. 29th. I called the LLMD's office today to beg for an earlier appointment, but there is no possibility. Although I've dealt with my symptoms for 9 years, they have hit an all time high. It seems like I can actually feel something moving on the right side of my head. Is it possible to actually feel your brain? I realize that may sound silly.
Mountain Girl
Posted by Lymetoo (Member # 743) on :
With Lyme, anything is possible. I would NOT worry about whether or not these drs will treat without a spinal tap. They obviously don't know anything about Lyme if they are using a spinal tap to dx it!!!!
Do you know that spinal taps are 20% accurate in diagnosing Lyme disease!?? 20%!!!! No way I would do that.
Posted by elle108 (Member # 11730) on :
With Lyme, anything is possible. I would NOT worry about whether or not these drs will treat without a spinal tap. They obviously don't know anything about Lyme if they are using a spinal tap to dx it!!!!
I second this. A spinal tap misses Lyme in mopst cases, and I'm continually amazed at the frequency with which ID docs seem to want to rely on it. If you had a bullseye rash, you have been infected with Lyme. PERIOD.
Posted by ralph (Member # 9189) on :
mtngirl - I personally know an RN / ND (Naturopathic Doctor) in WV that is extremely sharp on Lyme. Her daughter has had it for about 20 years (23 now, I think) and her Mom has a good number of patients she treats often with good results. I also work in health care and am impressed with the results this doc helps her patients get.
If you want I can PM you more info.
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