posted
My main symptoms that I have experienced for over 2 months are dimness of vision (like looking through lightly tinted sunglasses), and intermittent pain behind the eyes, both temples, and on the sides and back on head, and feeling faint (but only I dont.) Pain and dimness of vision increases with physical activity.
I went to the eye doctor 8/4/09 who took pictures of the back of my eyes and also dialated my eyes, and tests revealed no swelling and that everything was fine. No intracranial pressure. The eye doctor stated that at that time inadequate blood flow could also impact vision.
Someone had posted a very interesting article regarding POTS and NMH which I bookmarked because it was very helpful. (I wish I could remember the thread as I thank them for posting it:
The cardiologist I had seen one time and my family physican stated that I need to be taking salt. So I have been mixing 1/4 teaspoon of sea salt in 32 ounces of water. I only have 1/4 teaspoon a day of sea salt, though I do drink more water. Vision dimness was mentioned in the link above -- not sure if I actually need to add more sea salt and meet the RDA requirement, and if this would help.
Today I saw a Neurologist for the first time to verify if something else besides Lyme and Coinfections were causing this. My MRI done months ago was fine, and actually asked him if he would do a Brain Spect since it shows more detail, blood flow, etc. In summary, he stated that my symptoms did not warrant a Brain Spect and that my neuro exam was fine, and he did not need to see me back.
Lastly, I am posting blood lab results that were taken from a former LLMD. She stated that I had hypercoagulation, but none of my tests were out of range except D-Dimer:
D-Dimer: Range: <.50 My result: .59 H DRVVT Screen: Range: < 42 sec My result: 36 Fibroogen Range: 175-425 My result: 236
Fibrin Monomer: Negative Prothrombin Fragment 1.2 Range:41-372 Mine: 191 Thrombin-Antithrombin TAT: Range:< 4 mcg Mine 3.8 PTT-LA: Range: < 40 sec My result: 37
Prothrombin Time: Range: < 11.5 My result: 11.1 Thrombin Time: Range: 16-23 sec My result: 20
PTT Activated: Range: 22-34 sec My result: 26.9
Thank you for taking the time to read this long post. Im seeking to understand what is happening, whether it be NMH, POTS, Hypercoagulation, infection, or all the above. I only meet with my LLMD once a month as she is three hours away.
I know no one can give medical advise. Any input would be greatly appreciated. Thank you.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Well, I can tell you that d-dimer is not a good gauge as a stand alone test. Doesn't look like you have hypercoagulation.
MRI is not always a good gauge of neuro lyme either. Many (including me) have severe neuro problems yet have clear MRI and SPECT....so, again, no definitive answers here.
Unless you see one of the few docotrs who understand Dysautonomia, be prepared to be lost here as well...and the bottom line here seems to be clear up the infection and the POTS and NMH will go away......
So, I would say, unfortunately, infection and perhaps all of the above, but without clearing infection?????
Leaves you in the same quandry as before you posted right?
Posts: 3975 | From usa | Registered: Aug 2007
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posted
In my opinion if you do actually have POTS or NMH that needs to be treated just the same as if someone has pain. Yes, it is a symptom of adrenal stress, but it puts more sress on the cardiovascular system as I understand it.
As for hypercoagulation -- the tests can't look inside your brain. You can have bloodflow problems in the brain which might or might not show up on a SPECT scan that would not show up on standard tests for hypercoagulation.
How is your blood pressure? Has anyone ever taken your blood pressure sitting and then again standing to see if it goes up -- with NMH or POTS the blood pressure drops instead of rising as it should.
Unfortunately very few neurologists are Lyme literate and many of them do not put much faith in a SPECT scan because it is a functional test -- they are usually just interested in diseases like tumors or M.S. lesions etc.
I have 2 suggestions --
1st -- take some sort of enzyme such as Lumbrokinase to see if that helps. Here is a recent thread.
posted
One other suggestion -- one of the best herbs for vision is bilberry which is the same thing as wild huckleberry or wild blueberry.
Here is a link that explains the vision connection. I have no financial interest in this herb company, but have ordered from them several times as they have very reasonable prices. Click on detailed description at that link.
posted
Thank you very much Feelfit and Bea for the helpful information.
Bea~
To answer some of your questions:
About 2 months ago I had an appointment with a Cardiologist. He took my blood pressure and pulse lying down, sitting up, then standing. He stated he could see a small change in blood pressure, but felt it didn't warrant putting me on a beta blocker.
He also believed that a tilt table was not necessary because he was already seeing the the slight change in BP. Both he and my family physician both recommended salt since I do not eat a lot of salt. Currently taking 1/4 teaspoon sea salt a day. May need to increase it.
My blood pressure normally reads around: 107/68, 102/63, 110/70. My heartbeat used to be fast, but since taking sea salt and Magnesium it seems to have returned to normal.
Regarding adrenals, my blood cortisol test taken in the morning reads 9 with the top of the range being 22. Today I had a cortisol stimulation test and am awaiting test results.
According to what Im learning on the forum just in the past few days is that POTS and NMH can cause dim vision and blood pooling problems. So I am looking into your suggestion for purchasing Lumbrokinase. Can it be taken with antibiotics? Also looking into supporting the adrenals.
Back in March 2009 when very ill/bedridden also had dimmness of vision and IV Rocephin helped. I hope and pray that if I need to be on it again that insurance will cover it. My LLMD has tried to give high doses of medication to cross the BBB (for the nervous system), but my liver enzymes end up elevating.
I see you are from Virginia as well. I live between Charlottesville and Lynchburg. Thank you for all the helpful information. May your husband continue to get better and better with each new day.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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posted
that was my very first neuro symptom (dimming vision)... i have passed the TTT so i don't know what it was other then the first neuro-BB symptom...i do have all the other dysautonomia symptoms except the pooling of blood in my legs. i do continue to do vigorus exercise daily..this will help you with the heart stuff...keep your HEART strong!
Posts: 94 | From ut | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Thanks everyone for your responses. I soo appreciate it.
Thanks Keebler for the vrp articles on eye health. One of them stated that blood flow can affect the vision/retina. Dont know if it is blood flow or infection or both.
Ordered Lumbrokinase today and should arrive in a couple of days. Is it best to start with just one?
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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posted
Yes, I would just start with one lumbrokinase.
Most docs suggest spreading out the doses.
Hubby is now up to 4 per day. Usually takes 2 in the early a.m. about an hour apart -- before he gets up and 1 in the afternoon and 1 in the evening. He has actually taken 2 at the same time a few times, but has not taken more than that in one dose.
If this is going to help I think you will notice it within a week or even sooner.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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