posted
I'm looking for input from those of you who have experienced visual disturbances as part of Lyme or coinfections.
My 14-year-old daughter has Lyme and Babesia. Among her most troubling symptoms are 24/7 visual disturbances. Specifically, she reports seeing millions of shimmering, white lights all of the time. She also sees trails behind objects, after images (when she looks at a bright object, it remains in her vision after she closes her eyes or looks somewhere else), and other things like flashes of light.
I participate in a different internet forum for people with visual disturbances. Several have recently tested positive for Lyme and others are considering getting tested. They have asked me if I know of people who had this type of continuous visual disturbance that resolved with Lyme treatment.
I would love to hear your story and pass it along to them. Please share any details you can about how long it took for things to improve? Was it sudden or gradual, etc.? Is there any particular treatment that you attribute to its resolution?
Thanks much. Lesley
Posts: 164 | From USA | Registered: Jul 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I had/have similar phenomina. For me Whn I am realy sick (ie after relapse) I start to see black things moving my peripheral vision. Similalry, during a flairup of symptoms, I see ots of "snow" in my primary field of view. Finally after looing at something and closing my eyes I can see an afterglow of the image.
The problems get worse with worsening disease, but with treatmetn they go away. In my case they have gone away 3 times but I have relapsed twice. As noted, the effect is much worse during the routine symtom cycles. This could be lyme or coinfection related as the co-infections seem to get worse just afte the lyme symtoms (joints) flare up. In either case the cause appears to be based in the brain (not the eye or optic nerve).
Posts: 1184 | From north america | Registered: Feb 2003
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
I have convergence disorder which can happen to a lot of people with Lyme. Some will mistake it for brain fog and such but it actually has to do with the muscles of the eyes.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Leslie, Sorry to hear about your daughter and her visual problems.
I've been infected for about 9.5 years. Tested positive in June and started abx treatment.
I have floaters and a somewhat limited field of vision. Both these symptoms are worse at night (my worst time in terms of general flares), and so far, nothing I'm taking has seemed to affect my eyesight.
Hope this helps and hope your daughter is able to get some relief.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
The worst offenders causing problems in the eyes as well as in the teeth, gums, jaw, according to what Dr. K. sees in patients are Babesia and Bartonella.
Babesia, we all know, needs to be treated first. Dr. K. does works a lot with PC Noni and PC Samento. I give you here my notes -- I am always listening when he speaks.
Babesia and Bartonella
Use the seven slide test kit (ART) for Lyme Disease on the jaw. That is the most common thing that you find in the jaw that underly the major pathology. When teeth die, the main bug that is killing the teeth and affecting the eyes in different ways are Babesia and Bartonella. Those are the two bugs that do your teeth, give you the floaters, today you can see, tomorrow it's worse, etc.
The treatment for Bartonella is Frequency #1 and the treatment for Babesia is Frequency #2 in the KMT microcurrent device. They are designed to treat jaw and teeth and sinuses. Short of that, the treatment for Bartonella is the PC Samento (Biopure) and the treatment for Babesia is the PC Noni (Biopure).
Noni is 4-6 droppers full a day. Take a glass bottle - not plastic ---- (Dr. Klinghardt is convinved that it its better to starve yourself of fluids than to drink out of a plastic bottle. Completely reversed from what we believed in the past. It is better to starve yourself than to poison yourself. Make an effort to buy glass - not recycled glass. The trouble with recycled bottles - when they are recycled, they get washed with soap and they do one lousy rinse and what you get then is soap with more water in it).
Take water bottle with good water. Then you use the Matrix Electrolite, which is really an improvement over what we had so far. Matrix Electrolite is a phanatstic carrier agent to carry water and herbs into the cells where they need to be.
The dosage of the Matrix Electrolite (Biopure) -- you put a little bit in at a time; stir, then you taste. The moment you can detect the taste that is slightly salty, you have the right amount. The minimum amount needed will give the maximum effect. Because your need for electrolite changes as you are healing, your taste buds change and give you different information for the concentration and changes over time. Most the time in the beginning people need a lot of electrolytes. As they are filling up yourselves with water and electrolytes, the amount get less and less. And later on you need maybe a tablespoon in the bottle. It becomes very very cost effective.
Then you add the herb that you are taking into the bottle. For Babesia, which is his main concern with all the patients, the dose that you start is two droppers full of the Noni extract and weight. After two weeks, if we are not getting a die-off reaction, you can increase the dose gradually. Most people end up with 4 droppers full a day. It is very powerful at that level. For some bigger guys he goes up to 6 droppers full a day.
You go up in the dosis until the patient reaches the Yin state (ART).
The same for Bartonella. Bartonella responds to the PC Samento, just like Lyme Disease does, and by putting it in the bottle with the Matrix Electrolite, it becomes a different animal. Usually with Lyme Disease we start with one drop (not one dropper) a day. Do for a few days. If there is no reaction, go to two drops a day. Then fairly rapidly go up to the final dose until you come into the range of between two and three droppers full a day. Some people have had a severe Herxheimer reaction on one-half drop a day. 1/2 drop a day. How do you get 1/2 drop a day???????????? You put one drop in the bottle, but drink only half of it. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Just be smart around that. People with severe Lyme Disease get severe reactions. Yet they get through it.
Tame the beast Babesia first. Start with the PC Noni, which is a much more forgiving intracellularly working substance, an extract and concentrate of Noni, and it does not just use the Noni fruit, it uses the bark of the tree and the root of the tree. So some of the non-renewable of the plant are in there. There is a company you can read up on it (Nutramedix) that manufactures this and they sell their own Noni, their own Samento. Biopure adds their microcurrent frequencies into the Noni and into the Samento, which makes it a much more powerful remedy. Similar price, but you get a lot more from Biopure because it has all the energies loaded into it.
By combining it with the Matrix Electrolites you get a lot more punch out of it than taking it like others are suggesting it. The trouble is - Noni and Samento should not be used in the same bottle; they are biting each other. Some herbs work very well together - these two do not. It is recommended that you add into the treatment Eyebright. A great herb to clear up the facial problems that come with Lyme Disease - jaw problems and eye problems, tinnitus; often there is this constriction on the forehead that people with Lyme Disease have. Ecchinecea (feels the best one is from Standard Process) really works for Lyme Disease - these would be two herbs you can add in. And the most important is to add the Mucuna powder. Mucuna powder gives you immediately that neurotransmitter lift.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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I have similar things going on. I see very bright white sparkly lights but only when I am outside in sunlight or, oddly, at night in the dark.
I also have constant flashes where my vision completely whites out, like someone is taking flash pictures right in front of me. Again, this is only in dark places that I notice it (which caused an embarrassing moment for me at the movies when it happened and I jumped out of my chair I was so startled lol).
This is all in addition to the eye floaters I have. Oh and at night sometimes the sparkly things change colors. I am also very sensitive to any light shining directly in my eyes.
I was diagnosed with Lyme and Bartonella in August of this year. I have noticed that all my visual symptoms have gotten worse since I started treatment a few months ago, but I expect that to happen before it gets better.
Cheers,
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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Scott, are you out there ... after reading your latest protocol and newsletter, I've been wondering if you've seen any improvement in your visual symptoms.
Lesley
Posts: 164 | From USA | Registered: Jul 2005
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My eyes are my worst lyme symptom. I have had binocular and monocular double vision for 23 months. It has only improved after 7 weeks of IV Rocephin with Biaxin and Tindamax and after 30 days of Levaquin. It always returns.
I have tons of flashing white and blue lights, vertical bands of black and white, and I have had bouts of optic neuritis that resulted in me losing my vision for a period of time. I have trouble focusing and I have no depth perception. My vision did return after the neuritis but not without leaving a "foot print" on my retina.
I have paralysis of my 6th cranial nerve, binocular double vision requiring surgery to repair the muscles and monocular double vision which my ophthalmologist thinks is "fall out" from the neuritis but my LLMD thinks is neuro. The rest of my eye symptoms are neurological and they wax and wane with my flares.
Currently I am on IM Bicillin and I will be adding Factive on Monday for Bartonella (a new generation drug similar to Levaquin and Cipro).
Good luck with your daughter - eye stuff is miserable.
Bluetick
Posts: 98 | From MA | Registered: Dec 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello Lesley.
I had mega "visual disturbances." I had a very trippy thing called 'palinopsia.' I had to find out for myself what it was by researching as my doctors did not know; my duck claimed I was having 'auras.'
I would pass my hand in front of my face and see a trail of a thousand hands, as in frames of a slow-motion bad film, shimmering in the air. This would just absolutely trip me out.
There does not seem to be that much known about palinopsia. My neuro duck did not even know what it was. (Nor care, I might add.)
My LLMD requested I get a full eye exam by a retinal specialist. I had borderline high interocular pressure, and a large "thing" in my right eye. It turned out to be an "amelonotic nevus." Probably OK, but have to have it checked every six months in case it changes.
The palinopsia went away after many harsh months of antibiotics and head pain. I did have 11 frontal lobe brain lesions and some demyelineation bilaterally of nerves, and "absent cortical responses" on evoked potentials testing.
I do kind of miss the palinopsia... The only Lyme thing I kind of enjoyed. I would pass my hand back and forth in front of my face just to trip on how wild it was.
Here's a great link about palinopsia and other visual disturbances....
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
My visual symptoms weren't as interesting as those above here.
I would get the floaters but my main oddity was what I called "view master" vision. Similar to the toys we would look through to see slides stories...I guess I'm aging myself.
I would see the foreground very clear, background was fuzzy, just like in the view master toy.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Lesley--- Sorry to hear about your daughter being ill. I hate it when the kids are sick. Its one thing for us 50 year olds but it must be difficult.
Anyway, the visual disturbances are also one of my worst symptoms and I have Lyme and babesia.
Been on abx for almost 6 months and have noticed improvement. Initial symptoms were white lights flashing, bothered by lighting especially fluorescent, stabbing pains in my eye, auras around lots of things especially car headlights at night. Natural lighting is better so I limit my life to places with natural light. Sunglasses help too.
With treatment, the stabbing pains are gone. I can be in places longer and longer with artificial lighting.
The good news is that she should be getting better with treatment and she is lucky to have such a caring mother.
Posts: 460 | From Illinois | Registered: Aug 2005
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
This may sound weird but has anyone here had visual hallucinations when awake in the dark at night? I've had actual soundless movies playing for like 40 seconds up in the dark room at night. My jaw drops open, I'm fully awake and I can hear myself saying, I don't believe I am seeing this. They are not dreams. Other times A bright light flashes into my room and all of a sudden it will turn daylight outside the window and I will see my husband walking around outside (even tho I know it's really dark and that he isn't really there. Another time the light flashed again and I could have sworn I saw my son on the deck. I yelled out to him....I see you shining that light at me!!!! The my husband walks in and says what's all the noise about .....I just said....oh, I must have been having a dream. Other times objects just form in front of my vision. Very strange
Posts: 1176 | Registered: Oct 2002
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Sorry for not having seen this earlier. I can always be reached through my web site as well.
I see trails, squiggles and floaters primarily. With treatment, I note slight improvement, but not significant yet.
It is more notable when the background is bright - sky, light, snow, etc.
Hoping to see continued improvement as I continue the treatment.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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JimBoB
Unregistered
posted
I have had many of your symptoms with my eyes. But the floaters I had long before Lyme, as that is normal as you get older. THEY do NOT go away.
BUT my vision was deteriorating significantly for the past few months just before I joined this group in November, 2005.
It got to a point I could hardly see to drive, and everything was not only blurry, but very light and foggy with little or no contrast.
In November, I started Devils Claw, Cats Claw, whole, and Sarsaparilla and in a couple of days the brain fog lifted and my vision got super good; better than it had been in years. Very sharp, contrasty, very good depth of field, NO foggyness whatsoever. It has been several weeks now, and it is STILL that way, thank God.
The only time I have any trouble with it now, is when I get very tired, because I am up too late, like now, although it is STILL much better in these instances than it was before I started the herbs.
Not only did the vision clear up, but the pain behind the knees did, also, even before the eyes cleared up.
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Sis had uveitis and almost lost her eyesight. At one point all she could see was the big "E" on the chart. She HAD to resort to steroid shots IN HER EYES twice to stop the damage. She has a LITTLE permanent damage in one eye, but is able to drive. She went to a uveitis specialist in Chicago.
Too much TNF alpha causes this. The eyes are especially sensitive to this protein (acidic).
Need to watch the condition of the retina also...closely. Monitoring one's eye health by a very good eye doctor is smart during your journey back to health.
It is very, very, very rare that lyme causes blindness.
Like many things in life...some inflammation is good and necessary (in many ways, protective), but too much can be damaging.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
Hey yall I'm very concerned that I may have lyme. I have visual disturbances constantly 24/7 and have missed a lot of work recently. What do you all think here goes: I have like the tv static, when I read I see black spots, I see floaters and visual snow everywhere it's worse when I look at the sky and at white walls. Certain patterns of clothing drive me nuts rugs as well like my eyes are going crazy. Also when I open my eyes it's like I have no visual attention like I see things but they blend in and I'm not paying attention to them. I have trouble finding things, not because of the snow but for reasons unknown. I bump into things often. I don't have brain fog really or haven't noticed it. I've noticed recently some rashes that come and then go away, my scalp right now has some bumps and things on it. I realize that these lyme tests are unreliable, but have news of a dr who takes your blood in the morning then flies it to Fl (I'm in Mich) within 8 hrs to get an accurate diagnosis I forgot the name of the test it's not the elisa or western blot but it's supposed to be very accurate. Do these symptoms sound like lyme disease to you guys? Also I'm always, always tired.
Posts: 16 | From detroit,mi | Registered: Jan 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I would get tested, but I can't say that this immediately sounds like an obvious case of Lyme Disease.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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geniveve
Unregistered
posted
the vision problems have been very hard for me. i only got bit in june of 2005 and the vision problems started about november.
i've seen scorpions on my husband's shoulders and people walking at the corner of my eye. plus floating squares on the ceiling.
bright lights hurt and i often wear my sunglasses both inside and outside. this bright texas sunlight is often painful.
sure wish i could see gerard butler or some good looking cowboy!!!!!!!!
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Have had literally every symptom described above. Be assured that with proper treatment it will all disappear. I haven't seen a squiggle in years and I don't need any sunglasses any longer either - much less two pair, one on top of each other!
As I posted, I believe above, it is brought on mainly by Bartonella and Babesia. Make sure that you are not heavy metal toxic any longer. If you suffer, do not wear any contact lenses - they remain infected around the clock and you kill one bug and bring back on a few more. Keep your hands away from your eyes and wash your hands.
The bugs have been found on public telephones in Germany. Some people collected matters from the phones and grew the bugs at the laboratory.
Even the parasites play a role in the eyes. Make sure you cover that also with the appropriate treatment.
Wash your sheets often and keep your house as clean as you can manage. I know that's hard when you can hardly remember how to put one foot in front of the other. But do it - it will take your mind off some of the misery and it will help you heal quicker.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
To schimdog: You asked, "Do these symptoms sound like lyme disease?"
Yes, when you put them all together, they do look like symptoms of Lyme. The vision problems, floaters, spots, static, fatigue, and rashes.
When you posted on the other neurology board, you listed more symptoms, like anxiety. Some people who have Lyme Disease only have vision problems. The bacteria have infected the nerves to the eyes.
I'm glad you decided to check out this board.
Please take some time to look at the "Newbie help links" at the top of the Medical questions forum. You need to know which lab you want the testing done at, and why. It is sometimes difficult and frustrating to get the proper tests done.
You may need to post at the "seeking a doctor" forum in order to find a doctor who is VERY familiar with diagnosing Lyme, as it seems that most doctors are inexperienced in this area.
If you don't get many responses, it may be because your query is buried in the middle of another thread. You could post a new topic, with a complete list of symptoms and your history.
Wishing you the best, Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Check your personal messages. I'm from Michigan and my son has lyme and I will be getting tested for it also soon. If you need anything more e mail me and I can see if I can help.
Good Luck
Amy
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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posted
This may be true if it's due to normal aging, but if it's caused by Lyme, and the Lyme is treated, they CAN go away.
When I was on the east coast, I was treated for almost three years of ABX. At that point, I was almost in remission, and the floaters were gone.
When I moved out to the west coast, I had a relapse (since I stopped taking ABX), and the floaters came back full force.
So yes, they can be treated to remission, at least in my case.
quote:Originally posted by JimBoB: I have had many of your symptoms with my eyes. But the floaters I had long before Lyme, as that is normal as you get older. THEY do NOT go away.
BUT my vision was deteriorating significantly for the past few months just before I joined this group in November, 2005.
It got to a point I could hardly see to drive, and everything was not only blurry, but very light and foggy with little or no contrast.
In November, I started Devils Claw, Cats Claw, whole, and Sarsaparilla and in a couple of days the brain fog lifted and my vision got super good; better than it had been in years. Very sharp, contrasty, very good depth of field, NO foggyness whatsoever. It has been several weeks now, and it is STILL that way, thank God.
The only time I have any trouble with it now, is when I get very tired, because I am up too late, like now, although it is STILL much better in these instances than it was before I started the herbs.
Not only did the vision clear up, but the pain behind the knees did, also, even before the eyes cleared up.
posted
Thank you all for your responses. I've gotten tested for lyme, and am also getting re=tested with another more accurate test not the elisa and not the blot forgot the name.
I haven't worked at all this week because of my vision which is difficult to explain to my boss, because even I don't know what's going on.
I noticed that someone was taking cats claw and other herbs, I've heard from others that this may help my vision. So I'm gonna start on that on my own if I have to.
I may not even wait for the test results to come back. I'm pretty convinced I have this dreaded disease. Again thanks everyone for your support I really need it.
Posts: 16 | From detroit,mi | Registered: Jan 2006
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posted
Amy, thanks for your response. Please email me at [email protected]. I tried to email you but my server isn't working right now.
I appreciate your support and love to hear from fellow musicians as well, even though I am not playing or working for that matter because of my horrific symptoms.
Got to run going to the eye dr now to get a visual fields test. This is a pain in my butt I'll tell you. Thanks to all of you for your support as well!
Posts: 16 | From detroit,mi | Registered: Jan 2006
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posted
just got back from the opthamologist, she says my eyes look fine. She doesn't understand the symptoms that I'm seeing. Has anyone else gone through this?
She gave me a visual fields test a little abnormal on the right eye but nothing major she says so now...
She's sending me to a neuro-opthamologist. Did you guys all go through these channels? Did they ever find anything? I need help!!!
Posts: 16 | From detroit,mi | Registered: Jan 2006
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JimBoB
Unregistered
posted
CAP: You will notice that I got MY floater LONG BEFORE I got the Lyme, and THAT IS NORMAL when you get older. IF you are young and they are caused by Lyme, I guess they can be eliminated as you say. BUT when you get older, EXPECT to get floaters again. It is NORMAL in MOST of us when we get older. As a matter of fact a pro had posted such on this thread, I believe, but I do not see it there now for some reason.
Everyone is a little different, so each will have some of symptoms, but not others, that is the nature of the beast.
posted
Schimdog: THe test you are talking about in Florida is probably the Bowen test.
Get the book Healing Lyme from Amazon.com, who advertises here on this group to keep us going.
THis book covers most of WHAT you will need to help you along with whatever your LLMD prescribes. Some herbs that will help besides the Cats Claw and Devils Claw and Smilax are: Stephania Root, Vincamine,(Periwinkle); along with Vitamin C and zinc. HOPE this helps you.
I've had many visual problems that have all resolved with treatment.
I have been diagnosed with Bartonella Henselae, Babesia Microti, Ehrlichia Chafeensis, Mycoplasma Fermentens, Mycoplasma Pneuminae and Borrelia Burgdorferi (Lyme).
I used to have flashing lights, trails, floaters, peripheral hallucinations (where I would see something whisk past me out of the corner of my eyes) and a wavey pattern similar to what you see if you close your eyes after staring at a pool in the bright sunshine.
Like Michelle (I think) I kind of miss these too. At least there was something to entertain me while I was laying in bed unable to move. I'm a lot better now and don't lay in bed near as much as I used to.
I've got the flu at the moment so I'm a bit more negative about my health than usual. I'm scared my symptoms will flair up and I'll get worse again. Having the flu is a lot like how you feel every day with Lyme.
Oh yeah. Dog. The Florida test is probably the Bowen Test. It's been known to be very accurate but insurance companies don't acknowledge it as proof of disease.
I hope this helps,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
thanks corgilla and jim something needs to be fixed here so i can get back to work before i go broke. You say it's the Bowen test or lab I'm not sure will check it out today though. I don't know how anyone could miss the visuals man they are driving me absolutely crazy you guys are better people then me man!!
Posts: 16 | From detroit,mi | Registered: Jan 2006
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posted
My eye doctor told me the only way to remove floaters is through surgery. Once the gel is detached from the vitreous wall it is not going to reattach itself. You can have a decline in the number because they settle. Inflammation or an infection can stir them up again. I guess it would be similar to adding sugar to a cold glass of ice tea the sugar settles at the bottom until you stir it.
Posts: 649 | From United States | Registered: Dec 2003
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posted
I had strange visual symptoms: I saw double of everything for some weeks. I didn't get treatment for months cause the doctors didn't know what it was (only that it was serious).
My sight went to normal without treatment.
Posts: 155 | From Norway | Registered: Jan 2006
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posted
Just went to the family physician. Told him I suspected Lyme. Test results aren't in yet but he said it was rare. I showed him the forums on here about the visual problems and he just dismissed it as of being from my migrane history.
He did say that migrane auras only come on before the headache, which is correct but won't acknowledge that I may have lyme disease. I'm sure the test will come back negative, even so I am getting my test sent to fl by a lyme friendly dermatologist (I think you guys are right it's Bowen).
It's amazing that you have to become your own doctor and diagnose yourself, or at least suspect things yourself. Without the internet many of us would still not know what's going on. I'm again glad I found this site and this site may be what keeps me sane!!!!!!!!!!!!
Thanks again for all your help.
Posts: 16 | From detroit,mi | Registered: Jan 2006
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posted
Thanks to everyone who wrote about their visual symptoms. It was especially heartening to read Gigi and Corgilla and others whose symptoms sound like my daughter's and went away with treatment. I would be very interested to know how long you had them and whether they went away suddenly or gradually. I am trying to stay hopeful, but she's had these symptoms for over a year now with no improvement. She's been on abx for Lyme for almost 6 months (including 3 mo of IV) and Babesia treatment for 2 months.
Thanks again. Your recovery stories really are music to my ears. And to scimdog and others still dealing with this, I really feel for you. My daughter frequently tells me, if the visual stuff would go away, she could deal with the rest. It really drives her nuts.
Lesley
Posts: 164 | From USA | Registered: Jul 2005
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posted
Leslie, (sorry if I spelled it wrong). At least your daughter is diagnosed I'm getting the runaround from "conventional doctors" but finally found one willing to give me the real test in Florida. I agree with her holeheartedly,
THE VISUAL SYMPTOMS ARE DRIVING ME CRAZY! so I feel for her. I'm a school teacher and have to do everything in my power to get to work. Haven't worked all this week it's tough to deal w/ students when you see crazy visuals, can't keep track of them.
Keep me posted on her treatment, and success as I will do the same for you. I'm getting to the bottom of this hopefully as will you guys. Rock on!
Posts: 16 | From detroit,mi | Registered: Jan 2006
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JimBoB
Unregistered
posted
SHimdog: BOY IF you have to get back to work SOON, IF YOU were ME, I would get started on some HERBS instantly.
FOR me the brain fog and terrible vision problems lifted in a few days with herbs ONLY. I went to abx later, but not the first month.
I started with Devils Claw, Cats Claw, Sarsaparilla, then Andrographis and Resveratrol.
Now I am taking others too. Stephania Root is excellent for eye problems.
BUT my point is; my vision cleared up after just a few days of taking LOW dosages of the first three that I listed above.
IS the Lyme bug gone, I would say NO, but the symptoms are MUCH better. I can function fairly decent now MOST days.
posted
Jim, Reading about your improvement after only a few days is very encouraging. There is, of course, a big part of me that wants to try anything that might help my daughter, although I would probably be afraid to do it without working with an experienced naturopath or herbalist.
But can you tell me, how long did you have your visual disturbances? Were they continuous, 24/7? If I read your post right, they were more like blurry, foggy vision. Did you have snowy vision or see shimmering lights or trails following moving objects?
How did you know how much of the different herbs to take? Did you use a particular protocol? Thanks for the information, Lesley
Posts: 164 | From USA | Registered: Jul 2005
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posted
I have had many, many floaters. I especially relate to dmc's comment on the View Master vison referencing the toys we had as kids. I see 1 1/2 vison, not double vision, almost how it looks through a View Master.
I was on Levaquin and in 1 week my vision was absolutely perfect, almost light someone flipped a switch! Completely clear ( I was unaware how unclear it was) even though I have better than 20/20 vison and floaters were gone.
That lasted about a month and eyes went back to how they were. I have been getting tested for possible glaucoma for about 5yrs. When my vison was better I went to eye dr for pressure check on eyes ( I am usally 19-20). During this time my pressures were in normal range! They were both 16, now tell me that's not lyme!
I told my eye dr all about it and he did my exam and said I don't see any eefects of lyme IN your eyes. Now we all know lyme does not stand there waving it's arms saying "Here I am!".
That's when I realize some drs are unaware and incompitent when it comes to lyme.
-------------------- I'm gonna get that lyme !!! Posts: 61 | From Erie, PA | Registered: Dec 2005
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JimBoB
Unregistered
posted
Lesley:
YES, I have a PROTOCOL. It is from Stephen Buhner's book HEALING LYME. (Naturally).
I started out even slower than HIS recommended protocol, because I had been suffering for about two weeks with a very painful and nauseous stomach, (that was destined to get worse, once I went to tetracycline). So instead of starting with ONE pill three times a day of each type of herb, I only had ONE PILL A DAY of each herb.
I did NOT have his primary protocol for Lyme complete at first, as the first place I ordered from did not have the Andrographis, SO the first few days I only had Cat's Claw, (whole), Devils Claw, and Sarsaparilla. I sure am glad I had the Sarsaparilla, (Smilax), at first as it has helped tremendously to keep my herxes at a bare minimum, almost non-existant, except for the last two days of taking tetracycline for 28 days, and for a few days after stopping.
At first I only used HIS basic protocol plus Devil's Claw, but have expanded much of his primary protocol and am adding some of my own.
I am now even making my own capsules with a machine bought at StarWest Botanicals, which you can Google. Plus their empty 00 capsules. It takes quite a bit of time, BUT works for me while I am watching some TV at night.
If you have a lot of money to spare, buy them already done. But IF you are poor like me, then do your own capsules. you can get 3 differenct size capsules. You will have to have 3 different machines IF you have 3 different size capsules. You can get veggie capsules or the bovine capsules. Veggie capsules cost almost double. I have the non Veggie right now, but think as i get more and more into this "health" thing, I want to go to the veggie ones.
MOST of us have lived our lives wrong for MOST of it; INCLUDING me. But I want to change that, IF I CAN, and see HOW much better I can feel; each and every day.
Since so many have PM'd me the past few days, I want to start a NEW post, hopefully tonight or tomorrow, to give MY exact protocol right NOW, plus a little about how and why I am doing things. Take what you want out of it and make it your own. READ what others say too.
I especially recommend the Buhner's Healing Lyme book, and you can get it very easy and cheap by going to the left side of your screen and ordering it on Amazon.com by clicking there and then a portion of what you pay goes toward keeping this group afloat too.
Hmm. Some of my visual stuff went away slowly, some went away quickly. The flashing lights were gone pretty quickly. The pool pattern took longer along with the peripheral hallucinations (over a year but during that time less often). Floaters went away within a few months as well.
I still get some of these when I have a Lyme flare up. It's very rare though.
I hope your daughter and scimdog have relief soon.
Take care,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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JimBoB
Unregistered
posted
Hi Lesley, I FORGOT to answer your question on the floaters and vision promlems.
I have had the floaters for many, many years. I am not young like your daughter, and they are quite common among OLD people. I am 64. They are the squigglies type of shape. I haven't noticed any more since I got the Lyme at least on lately. They really bug you when you first get them but the brain gets used to them and you don't see them much after awhile. Except NOW when I am thinking and talking about them.
As far as the vision from LYME: IT got really bad for about three months or so JUST BEFORE I started my herbal regimen back on November 25th. It got so it was very dangerous for me to drive, and I let my wife drive most of the time around here. However the past two years I was traveling ALL around the country, (about 40 states), picking up and delivering OLD CAR PROJECTS. Buying and selling, mostly buying. Hauling for others too, to pay for the fuel.
My last trip to Nebraska, I met a gal in Iowa, Biting Back, on THIS list and SHE got me going on it and doing SOMETHING to get rid of this Lyme thing. Well, my GP was useless in this quest. So found out about the healing Lyme Book and ordered it off of the adv to the left of this post. The rest is history so far.
Herbs do NOT scare me, IF I read and study carefully and stick fairly close to Buhner's recommendations. He is very good at KNOWING what we need. AND HOW MUCH too.
My VISION was part of my brain fog and continuous headaches, I believe. It went away in a few days with the first three herbs at VERY low doses that I mentioned in an earlier post. My vision was VERY lacking in detail, kind of foggy, or without CONTRAST. AND I had trouble focusing. Had double vison, kind of, and could not read numbers, or letter, even large ones on the screen or TV. I do not have 20/20 vision anyway. I am near sighted, with glasses since the 5th grade.
Hope this all helps some. Got to get to work on our house project now.
posted
Jimbob, thanks man I will hunt for theses tomorrow. Will any health store carry this stuff? So taking devils claw, cats claw, and sarsprilla will help my vision?
Also what exactly is brain fog? Does that mess with your vision. Because I'll look at things but will not be paying attention to them it's weird. Like my eyes have no visual attention...Is that brain fog?
Thanks for your help man! I need to get to work man!
Posts: 16 | From detroit,mi | Registered: Jan 2006
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JimBoB
Unregistered
posted
I guess that could be brain fog. I have trouble thinking, short term, again now, and that too could be construed as brain fog.
But the Brainfog I was talking about, was a continual pain on the top of my brain, and everything was foggy to me. Things were like off in the distance and not real at times, though they were actually happening. The foggy, blurry vision contributed to the whole overall feeling. Like I was in a cloud or fog, things were not sharp and clear either in my thinking or vision.
But I imagine others could have a slightly different experience with it.
As far as the health food stores, I do not know HOW MUCH they would have. IF the store was big enough, I guess they might have it. I buy it ONLINE from various discount suppliers. And although most of them are quite large, they all do not carry everything.
SOme of them are vitacost, myvitanet, herbs-wholesale, wholesale nutrition, StarWest Botanicals, and 1stChineseHerbs. You can Google any or all of these to get to their website. I have ordered, easily from all of them. Only do not order by email from WHolesale Nutrition. Use their 800 number and call them. You will get MUCH faster results that way. I just bought their C-Salts vitamin C. The best there is for the stomach. JUst got it today, haven't tried it as yet. But will be taking 3000 mg a day of that.
As far as helping YOUR vision, I cannot say. I can only say it helped MY vision. I have also added Stephania Root a week ago for the eyes. BUT you can only get it in bulk. I put together my own capsules now. I did get some in tea pill form from 1stchineseHerbs, but Buhner does not recommend them. I was also taking Periwinkle for the eyes
Buhner's PROTOCOL for eye problems is:
Stephania Root one-half teaspoon of the tincture 3x daily, wyw wash with decoction.
Vincamine, (Periwinkle), 20 mg 3x daily.
Vitamin C 1,000 mg 3x daily, (effervescent salts from wholesale nutrition) and
posted
LESLEY: I had the vision problems bad for about 3 months, maybe. Can't remember for sure, and I did not write all this down day by day.
Maybe should have kept a diary, but I did not plan to be writing about this to the world.
Yes, it was 24/7 the last couple months, (September-November of 2005), till I took my first herbs on November 25, 2005. BUT got worse at times, especially when I got very tired and eyes got strained, like from sitting at the computer, or driving a long time, lack of sleep,(which is normal for me), etc..
I will tell you that the herbal protocol was great for my vision for the past two months, but for some reason, NOW that I got off tetracycline a week ago, it has not been AS good. Much better than BEFORE I started the herbs, but not as good as the past two months with or without the Tetracycline. I took the tet for 28 days. Could be herxing, not sure. Slight headache and stiff neck again too. But again, NOT as bad as before the herbs. Didn't have ANY of that BEFORE the Tetracycline.
SO THAT is another reason, I can't say HOW YOU EACH will react to the herbs. Depends on HOW MUCH and how RECENT you took abx, and probably what kind too. Plus we are ALL individuals with different reactions to things in general.
IF I get my artemisinin and red root tomorrow, I will start a babesia regimen on Saturday, using Doxycycline as the abx part of it for 28 days, and continue the herbs for 7 days longer. Plan to stop the Andrographis and Cat's Claw during that time, unless I find some big vision or other problems arise. Will play it by ear, by HOW I feel.
posted
Got my test back for Lyme...negative don't know what test that was probably Elisa but from what I hear that test is very inaccurate. So then I went to another Dr. who sends out the QRibb test at Bowen in Fla. That test came back positive with very high numbers of whatever. The point is that I have lyme according to Bowen. I researched the Bowen test and they say that everyone who tests there tests positive. They have 100% positive results. So I don't know what to think, but I do know that my eye symptoms are HORRIBLE right now along w/ many other symptoms so I do believe I have lyme and probably other co-infections. Now I need to get treatment don't know what they're going to do. what did they do for you guys? I'm praying that these eye problems will go away.
Posts: 16 | From detroit,mi | Registered: Jan 2006
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posted
My family dr put me on tetracycline today 4 times a day for ten days. This doesn't sound long enough does it? Everyone else said they took it for 28 days. I'm gonna have him refer me to a lyme dr now that I know I have it.
I HOPE THIS CLEARS UP MY VISION PROBLEMS! THIS IS HELL, HELL I TELL YA!
Thanks everyone for your advise!
Posts: 16 | From detroit,mi | Registered: Jan 2006
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posted
Schimdog, Your next big challenge will be finding a Lyme literate doctor to treat you. Have you tried posting on the Finding a Doctor section? You are right that 10 days of antibiotics will not be sufficient. My daughter is in her seventh month of antibiotic treatment now and there has been little improvement in her visual problems. I hate to be discouraging, but I think we are in it for the long haul.
Did you try any of the herbs that JimBob and others have recommended? Lesley
Posts: 164 | From USA | Registered: Jul 2005
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posted
lesley, No I didn't do that that's my next step. I really hope these visuals clear up. I've been taking cats claw and sarsparilla also vision essentials (made by dr julian whitaker he's online) and various vitamins. Noticed no improvement.
Is your daughter taking orals or iv? you know i can live w/ the visual snow, the images in the corner of my eyes, but living w/ lack of focus and visual attention is very difficult to say the least. It's like i'm daydreaming all day or something. But going to see a neuro-opthamologist in a week.
again good luck, I know I need it.
Posts: 16 | From detroit,mi | Registered: Jan 2006
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posted
Hi Scrim, Sorry to hear there's been no improvement yet from the herbs. I am starting to move in that direction, but it is a good reminder to me not to expect any miracles.
My daughter is currently on Ketek, Mepron, and Plaquenil. We're supposed to add Omnicef and Flagyl. She was on IVs for about 3 months -- Rocephin, Claforan, and IV Zithromax. Unfortunatley, no impact on visuals.
Just today, I scheduled two tests for her in April -- an electroretinogram and a visually evoked potential. This was recommended by her neuro-opthalmologist who sees a lot of Lyme patients. After her normal SPECT scan, his recommendation was that we go back and take a closer look at her retina. So, I guess that's what's next.
Good luck to you. And keep me posted on your progress with the herbs. Lesley
Posts: 164 | From USA | Registered: Jul 2005
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posted
You know I heard that there may be a "miracle" I don't know if anyones tried it but I spent $35 online for this "cure." I want to know if anyone's tried it.
Your supposed to take 12 1 gram salt tablets and 12 1000mg of vitamin c every hr for three days. Obviously you have to work up to this. They say you'll have diarhea and other side effects which they say is from the toxins leaving the body. This also stated that colonics will rid the toxins from the body (not that I want to do that, but if it works...)
So these experts say this will work, I'm going to get more vitamin c tomorrow and try to find salt tablets. Has anyone tried this? I'm gonna try and I'll let you know if my eyes get better, along with my other symptoms!
Posts: 16 | From detroit,mi | Registered: Jan 2006
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posted
007, Where did you here about this 3 day miracle cure? The little reading I did on salt and c recommends taking it for up to a year. And not hourly.
Posts: 290 | From ohio | Registered: Dec 2005
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that's the link I don't know if you guys can see it because I paid money for it but if you can sweet I'll share it w/ everyone!
Yeh it said hourly for three days, but like I said you have to build yourself up to it or you'll be on the porcealin thrown jall day!
Posts: 16 | From detroit,mi | Registered: Jan 2006
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My first symptom was blurred vision in R eye, that started in mid january, after a december trip to the NY catskills. I live in northern NJ. My vision is very blurry in this eye and i see clear trails, like lines and dots connected and floating, they look like GEL. it is like i always have hair in front of my eyes, things are constantly moving, a lot of spots. I have a lot of trouble focusing, like if i am at work at my computer and i lift my head to look across the room, everyone is hazy, but if i blink it will get somewhat better. i also have some dull pain around eyes, and eyes will get very bloodshot at times.. it also seems as if my eyes are bruised underneath, like where dark circles would be, very strange. i have seen an opthalmologist who said no optic neuritis, vision field test was normal, and he dismissed me with some dry eye in R eye. i have many other symptoms in other body part. i had 20/20 vision before the trip to NY. I am in the process of getting tested with igeneX. I hope something comes up! i am so sick of this battle to find a dx, all the drs. think i am nuts!
posted
Good luck with your tests pru, and remember, if you do get a negative this doesn't mean you don't have Lyme.
One of my first symptoms was also blurry right eye, it has moved into my left eye over the last years or so, but my right eye is still worse than my left.
Good luck.
Posts: 263 | From UK | Registered: Mar 2006
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posted
Thanks Chris. I ordered the initial lyme panel from igeneX because they say that is best to start with. I know of a good holistic neurologist in NYC that is affiliated with Gary Null, a famous nutritionist i follow. I will start to see him soon and begin a natural protocol. I cannot be bothered with antibiotics. What part of the UK are you from?
Posts: 55 | From portland, or, | Registered: Apr 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I used to see flashes of light. A bright light across my entire field of vision.
This went on for awhile (years). This symptoms went away completely but improvement was gradual (less frequent flashes till none.)
I havent had this symptoms probaly in at least a year and a half maybe longer.
I started getting same floaters when I was 14. By the time I was in my middish 20s
I always had atleast one black spot in my vision due to floaters.
I still notice floaters but either they are smaller or ther is less of them
cuz I don't have those big black spots floating across my vision anymore.
quote:Originally posted by pru: Thanks Chris. I ordered the initial lyme panel from igeneX because they say that is best to start with. I know of a good holistic neurologist in NYC that is affiliated with Gary Null, a famous nutritionist i follow. I will start to see him soon and begin a natural protocol. I cannot be bothered with antibiotics. What part of the UK are you from?
No problem. I'm from Kent, about 25 miles South East of London. My LLMD is located in Bolton which is right up north so I have phone consultations.
I decided to start with Samento as treatment, been on it for 6 weeks now and something is certainly happening.
Had a big herx for about 4 weeks non-stop and I have had some very good days in the last week. I have seen slight improvments in my fatiuge, which is promising. But my aches, pains, vision problems, anxiety are still really bad.
I will probably be going on antibiotics in about 2 weeks as well as the Samento, I'm going to hit the buggers with everything.
Good luck.
Posts: 263 | From UK | Registered: Mar 2006
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posted
Samento is very good. I drink the cat's claw tea if ill and it really helps. Do you take it in the tincture form? How long have you been having symptoms?
I was bitten in August 2002 and developed symptoms in November 2003 - so about two and a half years of symptoms.
It came on quite gradual at first, just triedness, light senstivity, anxeity and vision problems to begin with.
Then all the other symptoms came along. Fatiuge, weakness, aches and pains, vision problems, heart palpitations, dizziness, vertigo, chest pain, back pain and a whole load of other strange symptoms.
The last 6 months have been the worst. I only got my diagnosis 6 weeks ago because I was misdiagnosed with CFS.
Posts: 263 | From UK | Registered: Mar 2006
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