posted
During my two year process of a dx I had two MRI's. The first showed mild chiari malformation (this is when your skull was not formed completely and part of your brain hangs beneath your skull) mine was 3 mm below. Two years later another MRI shows 7 mm below. Now the neurologist dismissed this because they know nothing about it.
Now I have another condition with very similiar problems as lyme. I have what I could explain as severe carpul tunnel with muscle loss on my hands, just at the thumb and index finger. Severe headaches, leg heaviness, extremely annoying slurred speech to name a few. Anyway both lyme and chiari cause these symptoms, and both conditions are difficult to get a dx for.
Now I am going to a neurosurgeon in April to see what I am truley fighting. I know I have lyme with a positive WB from Igenex, but could it have attacked the weakest parts of my body? Does it work that way?
I have hadchiari my hwole life but maybe not until lyme attacked the area do I have problems. Just a theory. How do I know my lyme maybe healing and now I have to cure chiari?
Any input would be great!!
I am at least hoping having two conditions that cause such physical problems can let me get ALS out of my head like the one neurologist suggested I had. What are the odds I had three.
Thanks again
Posts: 9 | From Albany, NY USA | Registered: Nov 2004
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
What type of MRI's diagnosed your condition?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Notes up front: be aware that if lyme is present, steroids can be very damaging - unless life threatening and then with abx (antibiotics). However, if you are on an inhaler for asthma, stay on that and consult an LLMD. Same with if you are already on any steroids. It can be dangerous to just stop without medical direction.
AND - if the neurologist wants to do a spinal tap (lumbar puncture) you can "just say no" unless there is a very good chance of it being diagnositic for something other than MS or lyme. Both have very poor track records for this test being of any value.
As one poster says, it's like fishing. You can go fishing in a pond and you may or may not catch a fish - or a particular kind of fish. If you don't catch one, does that mean that no fish live in the pond ?
I don't know about ALS, but lumbar punctures can be very complex. If you decide to do this, please be sure to get advice from those who have done that.
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Chiari -
There are reports of a woman in the US who had been dx with severe fibromyalgia who was found to have Chiari malformation.
She had surgery and made a complete recovery regarding pain, function and fatigue.
This was over ten years ago, maybe more. The CFIDS Chronicle had lots of information about it and had printed a specific doctors' instructions for how to do the detailed scan.
One might contact the CFIDS Association for that article.
Chiari should be ruled out early for everyone with FM/CFS/TBI and similar conditions. But it is often overlooked or the tests done just shy of accurate &/or read by radiologists not looking for that.
If I were to have it and contemplate surgery, I would be sure to have someone who specializes in this. Not just any surgeon - or at least have my surgeon fully consult with a specialist in this technique.
I would caution to hope for, but not expect, complete recovery as surgery, alone can be hard alone and for the anethesia (sp?), however, if this is present, it could really help a patient find enough relief so the body could work on whatever other factors would then need attention.
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Regarding the ALS mention by your doctor. There have been several cases of people who had been dx ALS, then tested for lyme / TBI (tick-borne infection) . . . who got better . . . leaving the ALS dx in the dust.
One such person is a doctor - now doing only writing - but he was in very bad shape and, with lyme treatment, went on to go back to being a doctor for several years before retiring to write.
I'm not saying all ALS is lyme as I don't know enough about that. However, with all neurological dx such as ALS, MS, Parkinson's and even Alzheimer's that thorough testing AND a clinical exam / evaluation should be done with a LLMD of ILADS's training.
There have been many cases where the underlying cause was found to be a stealth bacteria such as lyme - or another bacteria or virus.
www.ilads.org ILADS International Lyme and Associated Diseases Society
And while this is all about MS and lyme connection, you may see parallels with what your doctor may have said about ALS:
CONTROVERSIES IN NEUROBORRELIOSIS by Audrey Stein Goldings, M.D. - Updated October, 2002
excerpt:
The objectives of this article are to cover issues related to Lyme disease that are not even-handedly addressed in the current literature. It will:
1 Present a practical approach for making the diagnosis of neuroborreliosis,
2 Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic ongoing infection),
3 Discuss the relationship between MS and Lyme,
4 Critique the current regimens published for treating neuroborreliosis, and
5 Present my own approach which may differ from some leading authorities.
``Anyone who, in discussion, relies upon authority uses not his understanding but rather his memory.''
--Leonardo da Vinci, Notebooks (c. 1500)
It is hoped this data will provide the reader with a broader understanding of neuroborreliosis so that he or she may better use current and evolving knowledge for clinical decision making.
--
full two page article at link above. Be sure to see the second page, it can be overlooked.
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The
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