posted
The side effects caused by lyme...whihc I think have yet to be indentified, like I had an abnormal autonomic screen test, and agood host of othet symptoms
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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abnormal autonomic screen test - very common with lyme.
The bottom line is are the meds working after 8 months? I have read most of what you have posted. I have Buhner's and Singleton's book and have thought about going to a Chinese Herbalist/Accupuncturist in Pawtucket RI. Read the part about meds not working----no fun and often wonder. Am on Mepron & Z PACK. Also gonna start infrared threapy. Have 2nd of CD57 & Lyme and Babsiosis (sp) test coming up.
Steriod drops/injections in eye were ok because it was localized (had doc call LLMD). There is a question out there whether pyogenic granuloma's are bacteria based. If I didn't go to Mayo and request tilt table never would have known about autonomic nervous system abnormality.
In "the lyme disease solution book" by Kenneth Singleton it says on pg 305 "Another potentially useful anti-inflammatory therapy is intravenous immune globulin (IVIg) Particularly helpful when gamma globulin levels are depressed, this very expensive therapy may be valuable for chronic neurological system inflammation related to Lyme. Insurance coverage is often a barrier to use of this therapy"
This is what I refer to in an immune compromised individuals and the fact that although my total IgG levels are ok it is the subclasses that make these up which I question as one is below the normal range and one is within range but on the low side? Believe it may be IgG2 AND 4 is below. Think there is a correlation. The 57 & 8 are also I believe immune markers, right?
Not a doc so not sure but think it all related. Putting someone's healty gamma gloubins into someone whose gamma gloubins are depressed.
Add the above in with an elevated ANA - poof doc's think auto immune wonder if they think like Doc Singleton does above????? Knowlegeable ones...
Are you familiar with this practice?
Sorry just been frustrated and can't stand the politics involved on the outside on both sides. Just I have a feeling the answer although complictaed is there just that it is separatedby BS or what one wants to believe is best.
To me we all should have an IgG subclass run, no?
We are not doc's all we have gained or hope to have gained through this site is knowledge.
I also belong to a lung chat where I was first introduced to this type of threapy for immune supressed individuals. c'est moi---lung disease immune supressant. It's called bronchiectasis. Eitiology my case unknown wonder lyme based? LLMD said interesting when I mentioned it. Not an easy ride.
We'll see what BI Doc has to say...Mayo on the day I left after telling those idiots this for 2 weeks finally mentioned something about immune system. Loved it when they look up CD57 on Google like I said an AMA Journal approved reference tool...
Mentioned this type of threapy to doc he said ahhh thought of someone else's gloubins in my system even though they supposedly wash them or something to that effect. Well if it works they could plant them in my butt for all I care. Believe Singleton uses this threapy a bit. Immunology threapy, no? Ah wish we all had answers.
Thanks for the info Hope round 2 of SS works out for me. I was given a name of a law firm that helps lyme infected individuals.
[ 30. August 2008, 05:24 PM: Message edited by: Raymond ]
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hi Raymond.
I am interested in this link you posted because I have been diagnosed with some autonomic diseases by a specialist in Toledo, Ohio who is "lyme friendly."
He basically explained to me that people who have autonomic disorders (in my case it's genetic) may never show symptoms until it is triggered by an infection like Lyme.
Just to clarify, this doctor is VERY supportive of my Lyme treatment, and believes with proper treatment for my tick diseases, these autonomic problems could get better.
However, I am glad I am familiar with them and am being treated for them, as a supplement to my Lyme/Babesia/Bartonella therapy. I am even considering looking into going to NYU now that you posted this, because my current dysautonomia physician is over-burdened right now.
Some people may not have these problems bad enough to warrant treatment, but I have to take my dysautonomia very seriously. Some drugs a lot of lymies take for sleep or energy or pain I cannot tolerate, and I'm glad I now know why and can avoid them.
Also, if you do indeed have a dysautonomia condition, the medications can improve your quality of life and make your body stronger while you are also dealing with the infections.
I see you also mentioned Immunology....keep in mind this is a totally different branch of medicine than what dysautonomia falls under. Autonomic nervous system disorders are very different than immune problems.....I'm not sure if you are saying you want to look into both, or one or the other.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
HOOSIERS 51 Hope I spelt it right. No I am saying two separate and distinct types of medicine you would know more than that than I.
I'm thinking there may be a link autonomic system controls allot. To what extent a link, not sure? You would know more than I but in order to control something which effects autonomic nervous system an antagonist if not genetic must be identified , no?
Related in one regards maybe treated in another, but like you mentioned if lyme based, then you must control or treat the lyme before or during the autonomic treatment if you expect results. Is that correct?
Like I have said on this site one of my symptoms is when I lay down get flush, eyes red, warm maybe that's where my autonomic system is off? Wish I could find out more.
Couldn't the same theory apply if disease was due to immune system would have to treat the immune problem in order to treat the autonomic system?
What are you given for you autonomic disease, if you don't mind me asking?
I'm just trying to gather ammo or should I say knowledge for when it comes time I won't just get a pat on the back and a bill for a co-pay...
Have you contacted anyone at NYU for this? Yale may aslo be an option. I can give you some names in neurology but they haven't told me if they are autonomic neuros...
Tell me what you can I'm listening...
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Raymond,
all the stuff I had posted was pretty basic, so I deleted that. I do know that some have been helped by IVIG but all this is way over my head.
I also have a dx of autom. dysfunction and vasovagal stuff. My heart rate goes DOWN when I exercise - and so do I !
It's all so complex. I hope you find the information you seek and the path to help you bounce back.
posted
Keebler you didn't have to delete it, it's knowledge. What we need. Great info. No one can remember everything especially me so a flash back once and awhile is a good thing...
IVIG is not above us it should be part of our treatment...and I am hoping the guy at BI realizes that when I go see him. But maybe I am off base...
One thing SSD or whatever disability company you are up against I do not believe takes a look at the overall picture that's why I spend at least an hour on the phone with Met Life (who have a nurse practitioner of all people reviewing my case) explaining they have to put the pieces together not just one months of doctors notes...Isn't this how doctors are suppose to treat someone????? Put the pieces together...
After reading Singleton's book his office sounded like an option, he's had lyme, chronic correct? If I didn't mention this I believe he gives IVIG threapy in his office. That MERSI Doctor did the same thing but said may need multi threapy multi discipline.
But I think his IV's were more for identifiable autoimmune diseases and immune suppressant treatments. Not sure of the difference. Should say it sounds reasonable suppressant is different than adding gamma gloubins but not sure and I have to say only guessing.
I don't want to tell you what to do you are very knowledgable it appears to me as most. Not here to say this treatment isn't any good, yada, yada, yada here to try and pray get well, Good Lord knows that we are all looking for answers.
I often go back over my old posts for review and sometimes cheat and ask the question again...
I'm still looking for a reply to the CD57 monoclonal antibody I posted a couple of weeks ago. It's the magic bullet theory just makes me wonder why sooooo slooowly it's revolving not the reply just the treatment. There were like well as of 2006 160 dieases they wanted to try this on. Not sure if FDA approved any...slooowly
I am not sure how sick you are but I hope you find answers also. God Bless.
[ 30. August 2008, 07:20 PM: Message edited by: Raymond ]
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
You asked if you need to treat the Lyme to see results from any autonomic nervous system treatment---the answer is no.
I saw results within days in being treated for these conditions--that is one reason I am such a proponent of treating them.
Here is a link from a topic not too long ago. It is about Melatonin, but I sort of side-tracked in this thread and talked about dysautonomia (autonomic nervous system disfunction). I have about 3 or 4 posts on this thread, so you can read them because they have decent information:
Keep in mind, there are many "names" for autonomic nervous system dysfunction---it is a broad range and they classify just about everyone based on symptoms and what is going wrong. Some of the terms/syndromes you may see are "POTS--post orthostatic tachycardia syndrome", dysautonomia, neurally mediated hypotenstion, hypermobility syndrome, Ehlers-Danlos syndrome.......the list goes on and on.
As far as what you take for it.....that dinet.org site has some good info. Some things that help are making sure you get a decent amount of salt in the diet, electrolytes, staying hydrated.
As far as drugs, Midodrine raises the blood pressure (mine was low) which helped me a little, but actually I am currently taking the beta blocker Pindolol and it is helping a lot with my overall energy level, lowering my heart rate, psychological issues, etc.
Some of my symptoms (that of course cross over with Lyme, but I can tell they are dysautonomia b/c they get much better with dysautonomia drugs and much worse with drugs that aggrevate dysautonmia) are as follows: high pulse, low blood pressure, feeling weak after a shower, not tolerating standing too long in one spot......I also have "opposite" reactions to certain meds (Ritalin makes me tired, etc), and sometimes have problems swallowing pills (my body can't cooridinate the muscles of the tongue with the throat)
As well as obvious "tell tale" signs I have: family history of strange autonomic disorders (my grandma has stretchy skin and black and blue bruises all over her limbs), I am bizarrely flexible (indicates abnormal collagen production), my joints pop in and out (once again, collagen issue), Brittish ancestry with thin build
As far as Autonomic being linked to the immune system.........I hope I didn't come across as "knowing" they don't, because honestly I have no clue! I just wasn't sure if you were "confusing" autonomic with autoimmune, because I used to do that.
I do know I have a few indications of autoimmune problems and it does run in my family, so who knows if they are related.
I think an autonomic nervous system doctor would have a better idea of whether they are linked and what to do about it than an immunologist. Honestly, I try not to mess with my immune system too much because the obvious "eating healthy" stuff, because I feel like there isn't much we can do, and hopefully any of those problems will correct themselves......that is my hope at least, take it for what it's worth.
It is hard knowing what is wrong and what we should treat.......I try to give my main focus to the tick diseases, but if there is anything else serious I need to treat in the meantime, I address that too.
Good luck, and hope this has helped some.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hoosier51 I am saying maybe misintreperted that if lyme is causing you autonomic problems, like maybe in my case I need to treat the lyme maybe along with the autonomic problem. If I do not treat the lyme the autonomic problem will continue..
Same with any diease, no? If lyme makes me twitch taking magnesium without taking lyme medication what have you accomplished. That's what I meant to say.
Is Midodrine a vaso constrictor? The theory of not messing with your immune system is what I'm trying to do with a nutrionist... The body will heal itself...but gotta do what you gotta do.
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
Yes, I think you should treat the Lyme, and maybe the autonomic problems will go away. That is the ultimate goal.
I basically just treat my autonomic problems so I can at least be a little more functional while going through this. I guess that is what is "accomplished."
I don't know if Midodrine is "technically" considered a vaso-constrictor, but that is essentially what it does, it helps your veins constrict, so i would say yes.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I just wish I knew what they heck is going on with me that's why I ask and the more I ask the less I understand so I am in the same boat as my doctors.....
AS far as meds that I take at night because of the flushness and warmth and blurry vision I get upon laying down I take what knocks me out, ambiem and a clonzepam..Heck did more in my 20's and 30's hehehehe
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Your best bet, if you are sure or at least pretty sure you have Lyme and/or coinfections, is to treat those. If everything else is too confusing, just focus on the Lyme and any possible coinfections.
It may take some time, and experimentation with different antibiotics before you see a difference, but you will get there eventually. Focus on that though.
I gave you all that info moreso because I thought you were interested, but if you don't have a plan for addressing your lyme that is what you need to worry about first.
Posts: 4590 | From Midwest | Registered: Jun 2008
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