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So I was wondering if anyone had their vision affected due to a herx. I've had double vision and it threw off my balance for a few days but its getting better and my doctor said in rare cases vision can be affected due to stuff dying off, basically a strong herx reaction and my vision would be back to normal soon. I was wondering if anyone else had this happen. My eye is getting better(right eye is affected) and I can walk without anyone holding onto me now,but I was still curious. But, I refuse to let this get me down, I am going to the beach this weekend and I am going to breath some fresh sea air and it seems like the perfect place to be with my eye covered with a patch. So argh, matey and thanks for any info guys =)
Hugs and prayers!
I noticed after being on AP, my vision has been improving. I did have brain fog, which drove me nuts. But it went away.
I noticed you are on Zithromax 250mg 1x MWF, also Lincocin IV 1x every 2 wks. What is this Lincocin? What type of AP are you on?
Thanks,
JB
Hi Eggs,
You might be interested to watch a video clip of Dr H, a highly respected Lyme Literate physician, who, amongst other things, explains that these pathogenic organisms get into the fluid in the eye, often causing uveitis, optic neuritis and other eye problems:
His video clip is the second one from the bottom and only about 10 mins long. It's about 6 mins in where he talks about eye problems.
Peace, Maz
At times I get a subtle herx that makes it hard to focus on near objects. It is a true herx, accompanied by other tale-tale symptoms. When I started MP the very first thing to herx, and herx hard, was my eyes. I am long past that 6 week ordeal now, but once in a while I elicit this focusing thing. When I had RA before AP/MP, my eyeglass prescription was changing as I watched, as it were. I suspected eye involvement but they didn't hurt. My eyes didn't improve change much at all on AP but as I say, the first 6 weeks or so of MP was all about my eyes. So they were involved afterall. I wish I could say that my eyes have resolved to 20-10 or something but I still wear spectacles. However AP/MP did seem to stop the constant lens prescription change.
Lincocin is just another type of IV antibiotic…not very many have heard of it but I have done great on it. My skin is almost completely back to normal with a few hard patches on my tummy and legs.
Froggy – when I started AP and especially after 8 months when it began paying off so well I was prepared to stay on Minocycline forever if that is what it takes. Heck, my rhumatologist planned on me taking his meds for the rest of my life and they were a thousand times worse than a simple antibiotic. But now I am hopeful that my new protocol is actually curative. The idea behind Brown's AP was that we have a parasitic infection of bacteria. Brown was able to roll it back with various tetracyclines and clindamycin but couldn't defeat it for good with the tools available at that time. It may be with Marshall's discoveries from molecular modeling, genomics and the new ARB drugs that he may indeed be onto the cure, that indeed, in some more time, that I can bag the antibiotics. A number of early MP patients with other dx's have already done that.
The problem that I have is that on my current combination of MP antibiotics I am now eliciting herxing in my brain. I have such little tolerance for cognitive and emotional herxing that I am ramping up on this combination only very, very slowly, already a year and a half. I have made tremendous progress in my neuro herxing and hence in my cognitive function since starting this combo but I reckon I will be at it at least until December and more likely until a year from now. I really hate emotional herxing so as I kill the microbes, as the theory goes, I want this herx to be enough to progress but not so much as to, oh, say, wreck my marriage and my job.:X
Long answer. Sorry. Yes, I do hope to be off all antibiotics in about 2 years or so.
john
john,
Are any of the people you know that are now off woman? I ask because I know men tend to do better than woman with this due to teh hormone thing. Also, have they been off the abx for a long time with no relaspes? I am jsut trying to figure out which route to take.
What do you think about Prof. N's thoughts and ways of dealing with this disease?
Thanks
Froggy
Froggy –
Women, yes
off abx without relapse? I would argue too little time has elapsed yet. Sometimes AP patients are stable off antibiotics for 5 or 6 years before they have a problem. That by the way is very good compared to being on classic Rheumatic meds for the rest of your life.
Professor N and Professor M agree substantially but disagree in some details. After careful consideration I decided to drink Professor M's kool-aid. I think either treatment or Brown's classic AP is preferable by miles to immune suppressing drugs.
john
[user=166]Eggs[/user] wrote:
So I was wondering if anyone had their vision affected due to a herx. I've had double vision and it threw off my balance for a few days but its getting better and my doctor said in rare cases vision can be affected due to stuff dying off, basically a strong herx reaction and my vision would be back to normal soon. I was wondering if anyone else had this happen. My eye is getting better(right eye is affected) and I can walk without anyone holding onto me now,but I was still curious.
Eggs,
My own illness patterns included some head and eye involvement, including (later) a sudden onset of uveitis. Luckily, I had learned (prior to this onset) about Dr. Emil Wirostko, ophthalmologist and former director of the Uveitis Department at Harkness Eye Center in NY, and also former director of another department there. He was very involved in research and had found the same type organisms in the eyes of his RA/JRA patients as Dr. Thomas McP. Brown found in the joints of his patients — each found these things independent of each other. My local ophthalmologists were insisting I had to use MTX to save my sight, but my then-AP-doctor, also an MD (H), said he felt I would still lose my sight if I stayed on that drug, maybe only slower. Together we decided I needed to see Dr. Wirostko; so I did.
What Dr. W told me, after doing his own detailed workup, was that I should get off the RX I had been given (MTX), and stay on Minocin. He also gave me drops and a reading/testing regimen to follow. He also told me to take ibuprofen (if my stomach tolerated it ok, and it did) to keep down inflammation. Dr. Brown in one of his papers had suggested a similar thing for his rheumatic patients to do 30 minutes before taking their abx, and felt it allowed the abx to penetrate better.
Back to Dr. W and the uveitis: Back home, my AP physician knew an excellent local ophthalmologist/former professor who followed my case, and in no time, the uveitis was resolved. I was so very grateful to have known about Dr. W and to have had such an astute AP physician to guide me during this very scary time.
This is to encourage you about your vision problems. It certainly sounds like the Minocin is addressing the organisms involved in your eyes that now seem to be responding to the effects of Minocin.
Best of luck to you!
AF
Yes I have it the double vision, bad enough to have to wear glasses. Very suspicious of it being caused by fungus from the abx. Not enough systemic for 5 yrs. Therefore it is going to take time for me to correct it but I am hopeful that is the cause. Time will tell.
Lincocin (incomycin) is on our PBS scheme here in Australia I found out about it after having spent a fortune on Clindamycin The lincocin is very similar – a sister drug but in intra muscular form. I used to give it to myself two days on and one day off. Yes it did wonders for me also.
[user=134]Rosemary Perth Aust.[/user] wrote:
Yes I have it the double vision, bad enough to have to wear glasses. Very suspicious of it being caused by fungus from the abx. Not enough systemic for 5 yrs. Therefore it is going to take time for me to correct it but I am hopeful that is the cause. Time will tell.
Lincocin (incomycin) is on our PBS scheme here in Australia I found out about it after having spent a fortune on Clindamycin The lincocin is very similar – a sister drug but in intra muscular form. I used to give it to myself two days on and one day off. Yes it did wonders for me also.
New comment from AF: Eggs, like Rosemary's post to you about her suspicion that fungus may also be involved in her eye problems, I believe this can certainly be a complicating factor — NOT THAT YOURS IS THAT SERIOUS NOW, BUT THIS IS TO SHARE WHAT CAN HAPPEN IN SOME INSTANCES. Some patients (according to actual scientific abstracts) have a much greater predisposition to yeast/fungal overgrowth than others. I strongly believe it prudent while on longterm abx (if one does not already have signs of fungal overgrowth) to regularly (even on a consistent low dosage) take an antifungal. There seem to be some safe OTC ones available. A copy of one of Dr. Wm Crook's latest books on the yeast connection to illness will have a list of these. He was by training and medical practice (in addition to research in this area since about the 1950's) a pediatric allergist. He got involved in this research because of a certain percentage of this young patients, who no matter what he did to get him well, their illness he had been unable to reverse. What he learned from his research was what made the difference in the treatment and their outcome. So…. the taking of probiotics seems to be essential along with AP treatment, but for most of us probably are antifungals to treat an existing problem OR to keep one from developing. Caprylic acid and grapefruit SEED extract are two recommended in the first book of his I read, “Chronic Fatigue and the Yeast Connection” — and later “The Yeast Connection and the Woman” which includes more specifics regarding yeast/fungal infections and immune disorders. (I'd never had an apparent, typical woman's yeast infection, and had no reason to think systemic yeast was a problem for me. However, after the first two years of chronic illness, and getting much worse instead of better, and having been prescribed 15 prescriptions of antibiotics with each onset of illness during those two years (this was not AP, but simply rx'd for sudden onsets of illness related to a jaw infection that had spread to my head/sinuses that would not go away). It was only after Dr. Crook actually got involved, and I was on his regimen, AND rx'd 4 months of daily Diflucan to address the systemic fungal overgrowth that I was able to get my life back…. temporarily anyway, until exposure to heavy mold (while living in an apt and building a home) knocked me back on my ear — this time diagnoses with RA and/or Lupus and/or MCTD. Turns out it is more probably MCTD, a the other two were ruled out clinically. So, my guess is that fungal overgrowth, plus the mold, really did a number on my body, especially since the early physicians treating my sudden onsets of infection and illness DID NOT PRESCRIBE PROBIOTICS BE TAKEN WITH THE 15 RX'S OF ANTIBIOTICS, setting me up for the systemic yeast overgrowth. Hope this example will serve as a caution and/or a “heads-up” to this possibility/probability. This condition can do great damage to our bodies. Dr. F in Riverside has a web site, and on it are graphs about various organisms and the type damage the can do to us. My bone scans and my history seem to be in sync with his graphs. AF
I was advised not to use the grapefruit seed whilst on the minocycline so I do not do that but recommended it to my children who were not on abx.
In answer to the eye problem. There is also the allergy eye associated with rheumatic disease, drops available at pharmacy. If you still have this then you are not on enough treatment to control the problem. There can also be eye problems associated with steriod use so be careful of them for that and other reasons.
Really hard working all this out. I found diet was instrumental in being successful especially with yeast. avoid yeast in foods or you have more problems.
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