posted
I am convinced I have neuroborreliosis: onset of acute radiculopathy that wrapped around right side 3 weeks after hiking in Austin and seeing tick on my daughter.
I have so many symptoms and have been followed by neurologist who thankfully has treated me in spite of neg testing on labs and CSF. 30 days of Doxycycline followed by 14 days of Ceftriaxone.
My right hand tremors and right leg involuntary movements as well as being very uncoordinated on right have improved. Insomnia followed by horrible fatigue, speech and memory prob have not changed.
What has gotten horribly worse is blurred vision. I could not see out of my right eye for 3 hours one day last week and most days cannot even read due to blurred vision both eyes that lasts for hours and then goes away.
Anyone else deal with this and how? I have researched a Dr. W in Austin, a clinic in Baltimore and a Dr. G in Bay area (who spoke at ILLDA in Europe this year)
Unfortunately as my hospital will not let me work until I am able to work "at full capacity" as nurse manager so financially strapped and cost of flights plus appointments etc are too much.
I have a referral to a functional medicine MD 45min away who doesnt list Lyme as a speciality but reportedly has Lyme so trying to make an appt there.
Thanks
(breaking up a paragraph for easier reading for many here)
posted
For my growing blurring vision, my chiropractor suggested I try drinking mangosteen juice, an anti-inflammatory juice. And it worked! It cleared up all eye symptoms in 24 hours. It has 43 xanthone compounds in it that neutralize free radicals created by inflammation.
You can find mangosteen juice in health food stores and online. I drink the Mango-Xan one because it is the most tart. I drink around an ounce a day.
We're all different in our responses to anything. If you try it, I hope it works for you!
Also, you're going to need to see a really good Lyme-literate doctor for treatment, not someone who's guessing or doesn't know much. Knowledgeable Lyme patients can help steer you. You can post in Seeking for referrals to Lyme-treating doctors in your area.
For now, you're going to need to treat. Hopefully the hospital will hold your position or let you return after some treatment.
[ 09-13-2016, 04:43 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
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posted
You might try a FIR sauna. Some spas have them and there are portable ones that start around $150, or 180. Every time I do the sauna my eyes get clear and white. I feel better too. Lyme hates it (the heat kills lyme and FIR goes deeper). Don't do it too long though or you will herx. I'd start at 20 minutes, 110 degrees.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Rumigirl
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posted
I heartily agree with Robin: You need treatment by the best Lyme doctor you can find and afford. In terms of afford, do everything possible to afford what you need, ask for help in whatever ways necessary. Keep posting here, and we will all help with suggestions.
Lyme loves the eyes and the nervous system and brain (besides joints, etc.). My eyes are filled with lesions from Lyme. My eyesight is greatly affected, especially because I developed Sjogren's, and autoimmune disease, that makes the eyes and mouth extremely dry.
IMO don't mess with a functional medicine MD right now; you need an experienced Lyme doctor who does nothing but that all day long for many years. You don't want this to get worse; you need treatment pronto.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Thanks to all who replied and just to clarify I live in New Orleans, LA. I have a daughter who lives in Austin (where I think I contracted it on a hike), a son in Houston and one who lives in San Fran so that is why I was looking into those places.
In regard to finances, do your Lyme MD's fill out disability paperwork? Unfortunately it is to that point, (I'm a nurse).
I will buy the mangosteen juice tomorrow!
Posts: 86 | From LA | Registered: Jul 2016
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bluelyme
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Member # 47170
posted
Check for toxoplasmosis. Consider bvt and rife ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
You can post in Seeking for an LLMD near where you are, hopefully - put LA in the heading.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Write out "Louisiana" in the title of your post when you do post over in "Seeking", or else most people will think you're in Los Angeles.
Posts: 8981 | From Illinois | Registered: May 2006
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WPinVA
Frequent Contributor (1K+ posts)
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posted
I agree that you need more, and better, treatment for the Lyme. You also may have co-infections that you haven't been treated for at all yet.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Welcome to Lymenet! PM sent for TX & Louisiana.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Please read the following about LLMDs and Texas which was recently posted about TX:
"Texas is not a great place to find a good Lyme doctor. Texas threatens its Lyme doctors and gets them to move or stop practicing without notice.
Then, if they start up again a year or so later, they do it to them again. So, there really are few Lyme doctors there and no top notch ones.
At least half of all Lyme patients travel out of state for their care. The doc is the key to the diagnosis and for getting rid of this horrendous disease. I can't emphasize that enough-the doc is the key."
When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this. Also ask if they fill out disability papers.
*Note: I would also contact the Lyme support groups to ask if they know of any "Lyme-literate" or at least "Lyme-friendly" ophthalmologists. I don't know of any where you are looking.
The top LLMD, Dr.H, has written a book entitled, "Why Can't I Get Better?". It is an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
posted
When I first started my treatment, my lyme doctor had me put antibiotic eye drops in my eyes. This took some time (I think 2 or 3 weeks), but it was a miracle!
My vision cleared up perfectly. A year or so later I had to repeat this treatment, but after that my eyes haven't bothered me much, despite lots of lyme & co.
Posts: 261 | From Nebraska | Registered: Jan 2010
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bluelyme
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posted
Hi sillia ,What kind of abx in the eyedrops ? Adc has some but some are floxies ...thanks
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Rumigirl
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posted
Yes, welcome to Lymenet! I forgot to say. Thank you, hopingandpraying, for welcoming and for giving so much information. It's a lot to take in, but all so important.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
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posted
quote:Originally posted by sillia: When I first started my treatment, my lyme doctor had me put antibiotic eye drops in my eyes. This took some time (I think 2 or 3 weeks), but it was a miracle!
My vision cleared up perfectly. A year or so later I had to repeat this treatment, but after that my eyes haven't bothered me much, despite lots of lyme & co.
I've heard of this, and probably need it myself. What antibiotic was used? And was your case diagnosed soon after you got sick?
I ask the last question, because for those of us who have had had it very long term, we probably need the drops for far longer, like many months or more.
Let us know how it goes, as you get proper treatment, including, hopefully, directly in your eyes.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Rumigirl and bluelyme--sorry not to respond sooner, I went off and forgot I'd posted here.
I'd been sick for several years when I started my treatment, had probably been infected as long as 15 or 20 years before. Nonetheless, treating the eyes with antibiotic drops just took a matter of weeks. This symptom was gone, though I continue on years later with other symptoms.
The doctor had three kinds of antibiotic eyedrops, which he said we would try one at a time. The first one worked though--it was "sulfacetamide 10%" which I had to put in every 3 hours.
Since I didn't try the other drops he had on his list, I don't have their names.
Posts: 261 | From Nebraska | Registered: Jan 2010
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Catgirl
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posted
What about silver for eye drops? Silver kills just about every bug (lyme loves the eyes).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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posted
I go to a good herbalist and he advised not to put silver in the eyes. He had a patient who did this, and the whites of her eyes were turned permanently gray.
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
I must have the same doc as Sillia. I just started the same eye drops, and I have two others lined out or try if these don't work. Hoping they do though! I'm seeing double really bad lately.
Posts: 748 | From Texas | Registered: Feb 2015
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bluelyme
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posted
Thanks ..sillia .sam i had a sulfa reaction a while back may try the bee venom eye drops ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Personally I would only put something in my eyes if an experienced practioner said it was suitable. There are other, non-sulfa abx known to work in the eyes without harm. Don't risk making things worse...
I'm more easy going about trying things in my ears. I had an ear infection for over two years, I did eventually put silver drops in it. The silver helped, but didn't completely cure. IR heatlamp did even more.
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
The next two are ofloxacin and then azasite. They are a good bit more expensive than the sulfa ones though. And of course one of them is a quinolone...
Posts: 748 | From Texas | Registered: Feb 2015
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Rumigirl
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quote:Originally posted by SickSam: The next two are ofloxacin and then azasite. They are a good bit more expensive than the sulfa ones though. And of course one of them is a quinolone...
Arghhh, a quinolone!!! Can it affect the eyes the same way the oral quinolones do? I wouldn't be surprised. I had multiple tendon ruptures from quinolones. They are evil. I know they have helped a lot of people with Bart, however----those that can take them.
But seeing double was another side-effect I had from quinolones. I'd look in the mirror and see a double pair of lips on my face!
Posts: 3771 | From around | Registered: Mar 2008
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posted
That's terrible, I'm so sorry Rumigirl! I see double too, it's crazy. I've heard of people getting floxed from quinolone eye drops, so I think I'd stay away from them if I were you.
Posts: 748 | From Texas | Registered: Feb 2015
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susank
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posted
I see a LL eye doctor in Houston.
I also have seen a LL internist in Houston who will do disability paperwork.
I know of a very good eye doctor in Austin - don't know if she is LL.
PM me if you want more info.
The good Abx eyedrops I think: Azasite.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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susank
Frequent Contributor (1K+ posts)
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posted
H-and-P - your mailbox is full.
BTW where/how is the OP?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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