Can Lyme cause cerebral atrophy?

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freexfallin
New Member


Date Joined Apr 2012
Total Posts : 11
   Posted 10/29/2012 11:52 PM (GMT -6)   
Hi all,

I'm not feeling very well at all right now, so I'm not going to go into my full symptom history. To make an incredibly long story short, I've been developing more and more symptoms ever since I was about 14 years old, and I'm 23 now. Most of my problems are neurological like difficulty with thinking straight, 24/7 headaches, poor memory, dizziness, hand and tongue tremors, trouble recalling words, balance issues, poor focus, poor coordination, random numbness, loss of my sense of taste (that has largely returned though) etc, but I do have some other things like ringing in my right ear, frequent urination, and chest pain.

I went to a neurologist, and he had a CT scan done of my brain. He looked at it and said it looked normal except there was some volume shrinkage. He asked if I had a history of heavy drug or alcohol use, so I told him I had neither (I've never even been drunk a single day in my life). He was just like "Well, that's okay, though. Some people just have that." and sent me home saying he'd follow up with me in 5 months.

I don't see how you can just shrug the fact that my brain is shrunken off, though, especially combined with all of the cognitive/neurological problems I'm having. There has to be something that's causing it, but I can't figure that out if I can't even get a doctor to take me seriously.

Summer3
Veteran Member


Date Joined Nov 2011
Total Posts : 1020
   Posted 10/30/2012 8:10 AM (GMT -6)   
If you have suspicion that your symptoms may be due to Lyme, it can't hurt to get some proper testing through Igenex and an evaluation from an experienced LLMD. I find that Lyme doctors generally are good listeners and most will figure out a way to help somehow even if your symptoms turn out to be something other than Lyme. The greatest attribute of the majority of LLMD's in my opinion is to take their patients' concerns seriously.

Since it's so difficult to verify the presence of Lyme disease definitively, perhaps you would be able to do an antibiotic or herbal challenge to see if you experience herxing or resolution of any symptoms.

I do not know any statistics regarding cerebral atrophy with Lyme, but unfortunately Lyme causes a great deal of problems including atrophy of various muscles. I would imagine it could extend to the brain as well.
www.lymepie.blogspot.com

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14773
   Posted 10/30/2012 9:24 AM (GMT -6)   
Hi Freexfallin -
Welcome to the Lyme forum! I'm so glad that you decided to drop in and check us out!

Actually, cerebral atrophy is fairly well documented with Lyme disease. Just do a "Google" search with the terms "cerebral atrophy". Several scientific articles even came up.

I would agree with Summer3, about you needing to be seen by a LLMD if you believe you could have Lyme or one of the other infections though!

I would encourage you to read through our "New to Lyme? Start here!" thread that sites at the top of the forum as it's packed full of important information, informative links, symptom lists and more.

To help you find a LLMD (Lyme Literate Medical Doctor), you can start a new thread titled something like:"Looking for LLMD in the _______ area."

You can also email our long time member, Dan's Mother at:phassan@optonline.net

You can also email Stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name

LoveGaia87
New Member


Date Joined Mar 2012
Total Posts : 13
   Posted 10/30/2012 9:30 AM (GMT -6)   
freexfallin,

I am so sorry to hear about your pain and suffering. I have been told that I have an "abnormally shrunken medulla", unexplained by my General Practitioner and mentioned to my LLMD, who shrugged and said she knew nothing about brain shrinkage and Lyme Disease. I have read that Lyme affects everyone's medulla, because it is the connection at the brainstem between the brain and the rest of the body. How else would I have obtained a shrunken medulla? But no one can make a conclusion for me. There are many neurological symptoms that can and will come along with chronic Lyme Disease and related tick-borne bacterias. It is not meant to scare anyone even further, it is just the blatant truth. I have experienced your symptoms when my disease was out of my control, and I know your suffering. Please, take Summer3 's advice and try to do whatever you can in your power to find out if this is Lyme or not. Even if the results are negative, what I would do is, right now, this moment, begin making a transitional lifestyle change to treat your body for Lyme. It can't hurt, it can only improve your condition. We are here as a resource for you, as are all of the numerous posts on this website. I will pray for you as I do for all of us with this wretched illness. This man, Stephen Harrod Buhner, is an essential writer and researcher on Lyme and co-infections, and here is his website http://buhnerhealinglyme.com/. My LLMD recommended his book, "Healing Lyme", to me when I first started seeing her last year. I recommend spending the money to own this book, it will explain and help you deal with your symptoms, Lyme or no Lyme.

freexfallin
New Member


Date Joined Apr 2012
Total Posts : 11
   Posted 10/30/2012 1:03 PM (GMT -6)   
Thank you for the responses everyone. Well, the problem with getting to an LLMD is that I live in a town in Georgia where there are virtually no LLMDs. I have already contacted ILADS, the Georgia Lyme Disease Association, and used that physician finder tool. ILADS told me that there weren't any doctors in Georgia let alone my area, so I would have to travel out of state. The Georgia Lyme woman said there aren't any LLMDs anywhere near me, but there is a doctor about 30 minutes away who has been willing to test people for it in the past. The problem with him is that he doesn't take insurance and charges $250 a visit. I'm virtually broke, so I could only afford to see him once. Unless he agreed to run the testing at my first visit, he's not an option. The physician finder tool pulled up 3 doctors, all of whom are 4 to 5 hours away from me.


I can't drive long distances because driving makes me feel really dizzy and off-balanced. Even if I could, I don't have a car of my own to drive in, and my father would never let me drive his car 4+ hours away. He's too concerned with the mileage on it and has yelled at me in the past for taking it somewhere an hour and a half away. Plus, he doesn't believe that there's anything wrong with me and thinks I'm stupid for spending my money on all of the doctors I see when all I have to do is just stop being a hypochondriac.

Currently, I'm seeing an acupuncturist/Chinese herbalist who has me taking formulas from Heiner Fruehauf's Classical Pearls herbal lines. Not sure if anyone's ever heard of those formulas. He's the one who told me that a lot of my symptoms are consistent with Lyme, although he didn't tell me I definitely had it. Just threw it out as a possibility. I haven't noticed a huge difference with the herbs. The first time I took one of the formulas, my brain fog became amplified, and I became more sensitive to sounds and lights than I usually am, but I don't know if that was a herxy thing, a coincidence, or what. He said it could very well take several months to see any real benefits with the herbs, so I'm just sticking with them for now because they're the only thing I really have at the moment.

I did recently order a collection kit from IGeneX. I have an appointment with a new neurologist in 2 1/2 weeks and am going to ask if he'll authorize a Western Blot and CD57 for me, but I don't know if he'd be up for it. If not, I can try asking my old neurologist and/or my GP, but who knows if anyone is going to agree to do it for me.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14773
   Posted 10/30/2012 2:42 PM (GMT -6)   
I'm using Chinese Medicine to heal from these infections as well, so you can stick with your TMC Practitioner if you choose. I have heard of and read a bit on Heiner Fruehauf's Pearls, although I've never used them. My Practitioner studied under Heiner Fruehauf though and said he was wonderful.

There are two 'interviews' that were done with him -which can be found here:newdirectionnaturalmedicine.com/educational-links/resources-links/
One is about Lyme disease and the other one is about parasitism, which most of us have to deal with.

I can go into my treatments a bit if you are interested, or you can just email me and we can talk all you would like.

If I hadn't stumbled into seeing my Chinese Medicine Practitioner, who knows where I would be now as far as healing from these infections! I'm a complete convert!! smilewinkgrin
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name

freexfallin
New Member


Date Joined Apr 2012
Total Posts : 11
   Posted 10/30/2012 7:54 PM (GMT -6)   
Traveler said...
I'm using Chinese Medicine to heal from these infections as well, so you can stick with your TMC Practitioner if you choose. I have heard of and read a bit on Heiner Fruehauf's Pearls, although I've never used them. My Practitioner studied under Heiner Fruehauf though and said he was wonderful.

There are two 'interviews' that were done with him -which can be found here:newdirectionnaturalmedicine.com/educational-links/resources-links/
One is about Lyme disease and the other one is about parasitism, which most of us have to deal with.

I can go into my treatments a bit if you are interested, or you can just email me and we can talk all you would like.

If I hadn't stumbled into seeing my Chinese Medicine Practitioner, who knows where I would be now as far as healing from these infections! I'm a complete convert!! smilewinkgrin

Oh, that's great to hear that you're having success with TCM and that your practitioner thinks highly of Fruehauf! Most other people I've told that I've been doing the herbal thing have been like, "You realize how dangerous that is, right?" Maybe they're right that the herbs are worthless. Maybe they'll wind up helping me. I have no clue. I'm not as optimistic as I was when I started them, but as I said, they're the only thing I have at the moment at least until/if I can get a diagnosis.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14773
   Posted 10/31/2012 10:19 AM (GMT -6)   
why would people be telling you that using herbs are dangerous???? I mean they are pretty powerful, but when used properly they are safe.

I can tell you that the herbs aren't worthless - you just need to be on the right ones!
See if you Practitioner has read the interviews with Heiner Fruehaus - that explains much. Also tell your Practitioner that to treat Lyme you need to "Expel Toxic Heat". That should help.

If not, I can share with you the herbal recipe that I used to get a good start on my healing from Lyme - we had to go after the other infections, so had to stop using that recipe for now, but it worked really well for me.

Another thing you must consider is that Lyme rarely travels alone. It's usually found with Babesia, Bartonella, Rocky Mountain Spotted Fever, Erhlichia, Anaplasmosis, and/or a couple of others. If you will read through our "New to Lyme?" thread, we have some really good symptom lists to help you decide if you should be concerned about having any of the other infections.

If there's any thing that I can help you with, please don't hesitate to ask!! I don't know all that much about the treatment of these infections with TCM, but I'll happily share what I do know!! smilewinkgrin
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name

freexfallin
New Member


Date Joined Apr 2012
Total Posts : 11
   Posted 10/31/2012 10:24 PM (GMT -6)   
Traveler said...
why would people be telling you that using herbs are dangerous???? I mean they are pretty powerful, but when used properly they are safe.

I can tell you that the herbs aren't worthless - you just need to be on the right ones!
See if you Practitioner has read the interviews with Heiner Fruehaus - that explains much. Also tell your Practitioner that to treat Lyme you need to "Expel Toxic Heat". That should help.

If not, I can share with you the herbal recipe that I used to get a good start on my healing from Lyme - we had to go after the other infections, so had to stop using that recipe for now, but it worked really well for me.

Another thing you must consider is that Lyme rarely travels alone. It's usually found with Babesia, Bartonella, Rocky Mountain Spotted Fever, Erhlichia, Anaplasmosis, and/or a couple of others. If you will read through our "New to Lyme?" thread, we have some really good symptom lists to help you decide if you should be concerned about having any of the other infections.

If there's any thing that I can help you with, please don't hesitate to ask!! I don't know all that much about the treatment of these infections with TCM, but I'll happily share what I do know!! smilewinkgrin

Well, they're not telling me that the herbs are dangerous. They're telling me that treating an undiagnosed condition with herbs is dangerous and, if I have Lyme, using TCM instead of antibiotics is dangerous. I understand where they're coming from; I just don't feel like I have any other options right now.

I do know that Lyme rarely travels alone, but I also know that co-infection tests are very pricey, so even if I can find a doctor to sign off for a Blot and CD57, I probably can't afford the co-infection tests. That said, I think the herbs I'm taking are aimed at stamping out the other infections, too. Maybe. Here are two PDFs that have some info on the formulas I'm on.

http://www.classicalpearls.org/downloads/formulas/LightningPearls.pdf
www.classicalpearls.org/downloads/formulas/ThunderPearls.pdf

My practitioner has worked with Fruehauf before, so I imagine he's familiar with his literature, although I'm not sure.

I'm not really sure of what questions to ask right now, but I will keep your offer in mind! Thank you!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14773
   Posted 11/1/2012 10:13 AM (GMT -6)   
Well, I sure wouldn't worry about using TCM instead of abx! I started out on abx, but I just kept getting more and more ill, until I was completely bed bound, my adrenals were ready to shut down and a number of other things.

Once I started on TCM, I started healing and after 9 months of building my body back up, I started my Lyme protocol - in just three short months I was beginning to feel and see real healing! So don't listen to those who don't understand the practice of TCM and the scientific basis it has for not only treating, but making huge improvements in people's quality of life!

The tests for the co-infections are quite poor - just like those for Lyme itself - so testing isn't always all it's cracked up to be. I would only suggest that you read the symptom lists so that you can have an understanding of what infections you likely have besides the Lyme.

If you don't mind, I would be very interested to know how well those two formulas work for you!! Would you be so kind as to let us know how you are doing as you go through your treatments?

Sounds like your Practitioner is doing a good job!!
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name

hezaa
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/13/2013 2:54 PM (GMT -6)   
Hi all...

I just started the Classical Pearls protocol with my Acupuncturist. We've been planning for months and he took training with Fruehauf. I am excited to finally be at this point!

My protocol is being customized for my particular symptoms and issues. My acupuncturist is tailoring it just for me, which is a good feature of the Classical Pearls protocol.

I had been on abx since 2010 and my body just cannot tolerate much of them anymore. Plus, I really connect with the Gu Syndrome descriptions. I feel Chinese medicine is a more well-rounded approach than jack-hammering with abx.

I'll post as I move through the protocol and keep you all posted! turn
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