Dry eyes

[Michele]

Hi RBFers,
I have a newish bothersome symptom that I’d appreciate your help with. In the last couple months I have experienced a significant increase in dry eyes. I’ve been applying refresh and genteal drops for severe dry eyes but the discomfort has reached new levels tonight! My LLMD (who is also a rheumatologist) said it was a side effect of colchicine. In asking my pharmacist and looking at rx.com it is not listed as a side effect. I suspected she would suspect sjogrens or a part of the collection of symptoms of autoimmunity. While I was relieved she didn’t go that direction, my eyes continue to get dryer! Ouch!!

Has anyone dealt with this symptom? I’d appreciate some input!
Thanks!
Michele

[A Friend]

@Michele wrote:

Hi RBFers,
I have a newish bothersome symptom that I’d appreciate your help with. In the last couple months I have experienced a significant increase in dry eyes. I’ve been applying refresh and genteal drops for severe dry eyes but the discomfort has reached new levels tonight! My LLMD (who is also a rheumatologist) said it was a side effect of colchicine. In asking my pharmacist and looking at rx.com it is not listed as a side effect. I suspected she would suspect sjogrens or a part of the collection of symptoms of autoimmunity. While I was relieved she didn’t go that direction, my eyes continue to get dryer! Ouch!! Has anyone dealt with this symptom? I’d appreciate some input!
Thanks!
Michele

http://www.allaboutvision.com/nutrition/fatty_acid_1.htm
[The following is only one of the excerpts in this article. The others are also worth reading and perhaps printing the document. A number of years ago I was interested in knowing more about Essential Fatty Acids. The information I read that day certainly gave me an “ahaa moment.” I didn’t then know very much about our great need for EFA’s. AF]

“Omega-3 fatty acids also have been found to reduce the risk of dry eyes. In a study of more than 32,000 women between the ages of 45 and 84, those with the highest ratio of (potentially harmful) omega-6 fatty acids to beneficial omega-3 fatty acids in their diet (15-to-1) had a significantly greater risk of dry eye syndrome, compared with the women with the lowest ratio (less than 4-to-1). The study also found that the women who ate at least two servings of tuna per week had significantly less risk of dry eye than women who ate one or fewer servings per week.
Omega-3 fatty acids also may help treat dry eyes. In a recent study of dry eyes induced in mice, topical application of the omega-3 fatty acid ALA led to a significant decrease in dry eye signs and inflammation associated with dry eye.”

Hope this information may be helpful.

[Michele]

Hi AF,
Thanks for your link and information. It’s nice to have your support. I’ve had other sources confirm your information. A friend with Sjogrens syndrome told me she takes fish oil (along with a gluten and sugar free diet) to combat the dry eyes pretty successfully. Ironically, during the time my eyes have rapidly begun to get dry I had switched to taking Krill oil. My eyes are now very uncomfortable open or closed. They feel dry upon waking up! I’ve been pouring Genteal drops for severe eyes into them. Steamy showers don’t help and warm wet cloths placed across my eyes don’t help. Ouch! There doesn’t seem to be any oozing or caking or redness, but my word do they hurt! The new meds along with switching from fish oil to krill oil is Coartem and armour thyroid. I just took a break to do another google search. Coartem has a list of side-effects that could explain any symptom of any disease. Dry, itchy eyes is listed as a less common symptom. This may be it. How to get rid of Babesia?? I was hopeful the Coartem would be the answer for that, but somehow I need to protect my eyes. 🙁

Thanks again AF!

Michele

[Maz]

@Michele wrote:

Coartem has a list of side-effects that could explain any symptom of any disease. Dry, itchy eyes is listed as a less common symptom. This may be it. How to get rid of Babesia?? I was hopeful the Coartem would be the answer for that, but somehow I need to protect my eyes. 🙁

Hi Michele,

You poor thing! Seems to me that this is an unreasonable side-effect to have to endure if indeed Coartem is the cause. 😥 My LLMD just put me on low dose (compounded) Ivermectin, now being used as an effective anti-protozoal (see Fry’s research on Protomyxzoa rheumatica). Any chance Dr. Z would switch you out to something like this for your babesiosis? I only started it on Tues of this past week and the worst side-effect, thus far, has been a bit of nausea for a couple hours after my dose (taken on an empty stomach), but I figured out that if I took it at bedtime, it resolves that issue completely.

One additional thought before I hit the sack…have you had your thyroid checked lately?

[Michele]

Hi Maz,
It’s nice to hear from you. I emailed my doc tonight to let her know what is going on. I looked back in my patient notes and these symptoms started around the start of Coartem. Overall, I feel really dehydrated and I keep drinking as much as I can. At this point, I plan to stop the Coartem and see if the symptoms get better. Unfortunately, Coartem has a long 1/2 life so it will take a few weeks to discover if this is indeed the culprit. In the meantime, I am uncertain if I should have an opthamologist check my eyes just in case there is some other cause. 😕

In June my thyroid numbers dipped into needing to take armour thyroid and my numbers are tested each month. They rose back into acceptable range on my test of a couple weeks ago. Though, I find it worrisome that my thyroid worsened in the last couple years of lyme treatment.

I was pretty hopeful the Coartem was going to be the magic bullet for the Babs. I had a significant herx from the first dose.

How does your doc monitor your babesia blood levels? I contacted IGeneX last week for clarification on the IgG vs. the FISH testing and it does sound like the FISH tests for live organisms. It will certainly be a question for Dr. Z in the future! I’d like to know if we are treating a past infection or a current one! Does your lyme doc also consider mold and heavy metals in your treatment?

I hope you are doing well and everything is good overall!
Michele

[Maz]

@Michele wrote:

I looked back in my patient notes and these symptoms started around the start of Coartem.

In June my thyroid numbers dipped into needing to take armour thyroid and my numbers are tested each month. They rose back into acceptable range on my test of a couple weeks ago. Though, I find it worrisome that my thyroid worsened in the last couple years of lyme treatment.

How does your doc monitor your babesia blood levels? I contacted IGeneX last week for clarification on the IgG vs. the FISH testing and it does sound like the FISH tests for live organisms. It will certainly be a question for Dr. Z in the future! I’d like to know if we are treating a past infection or a current one! Does your lyme doc also consider mold and heavy metals in your treatment?

Hi Michele,

Lovely to see you here, too, though sorry you had to stop by, if ya get my meaning. 😉

Yes, does seem a bit synchronous that the dry-eye symptom corresponds with starting Coartem. I mentioned thyroid, too,because my Mum had Grave’s with ophthalmic involvement and initially it caused a dry, grainy sensation in the eyes…felt like she had grit in her eyes, I recall her saying. It is a nuisance when the old thyroid starts crashing, but the upside is that when it’s identified and properly balanced, people live long, healthy lives. My Dad had his thyroid totally burned out in his 50s due to hyperthyroidism and, although he’s ailing now, he is the grand old age of nearly 87 – neither my Mum nor Dad had any form of rheumatic disease. Let’s just hope that in your case it’s a side-effect of Coartem and that by switching out to something else for babs, this nuisance will soon be a thing of the past. In the meantime, wouldn’t be remiss to have your eyes checked, for sure.

Both my old and new LLMD don’t monitor babs levels, rather they prefer to monitor symptoms. Unfortunately, no labs are very accurate for babs and it is almost an impossibility to eradicate entirely, so treatment is given until symptoms resolve. Same for Lyme labs – not worth re-checking these, as measurable antibodies will always likely show up (in a waxing/waning fashion) and it’s probably more a question of state of immune function. If symptoms recur, then treatment is re-commenced (similar to chronic malaria tx). Ivermectin seems to be the new fad for treating protozoans (these particular bugs are becoming increasingly resistant) and is pretty effective, too. So far, I’m doing great on it, though I’m always aware it may be the “quiet before the storm!” I’ve also been started on a very low, compounded dose to keep any herxing as tolerable as possible. As far as joint pain from RA goes…it’s practically zilch now, even in my bad knee.

Yes, the new LLMD is treating me with various things to assist with heavy metal chelation and detoxification. The most effective things so far have been the FIR saunas, Glutathione IV pushes, undenatured whey protein, Pekana Homeopathic Detox Kit, Myer’s Cocktail, and various supps (NAC, ALA, milk thistle and Liposomal Glutathione softgels). Haven’t specifically targeted mold yet, as this new doc is taking a carefully measured approach, but not sure it’s a huge issue for me.

Thanks for your kind wishes, Michele! I sure do hope it won’t be long till your eyes feel better. :geek: 😯 Please come back and let us know what you discover.

[DiamondTNT]

Sjogren’s Syndrome? Many RA patients develop Sjogrens and that means dry eyes and general dehydration.

[Michele]

Hi RBF friends,

I’m just checking back in with some news. Thanks for your note Maz! AF I received your very thoughtful PM and will reply soon!!! Thank you! Diamond, you sum it up succinctly.

Dry eyes is an RA and autoimmune symptom and Sjogrens. What’s tough for me to discern is this a massive herx from the Coartem since it coincided with it? There are always multiple variables and I have also had an enormous amount of work stress and extra long work days. Stress is enemy #1 for an immune system. Now along with the dry eyes I have joint pain…again. This appears to be an all-around flare. Dang! This was really my first day waking up with the joints flaring in many months, so I’m crossing my fingers this isn’t going to stick around, but it is Fall and ’tis the season. I don’t like the time-table of these symptoms.

I saw an eye doc this morning who found blepharitis and the autoimmune condition and the Lyme prescription medications as all colluding to create eyes that have zero moisture immediately after blinking. Normally we are supposed to have moisture on our eyeballs for 10 seconds after blinking…according to this doc. So, he prescribed Restasis for me. It’s immunosuppressant. I’ll re-check in with Dr. Z about that tomorrow, but I am betting she’ll be on-board with it. Restasis takes 30 + days to show if it will work. Doc said it works for about 90% of people. Since this inflammation is potentially damaging to the cornea, I’m choosing to take the immunosuppressive to slow down the immune response. 😯 Somehow I hope that Dr. Z can help me regain control of the flare. She said to increase all B vitamins and A vitamins but not to drop the Coartem. 😥 If this is a herx, I don’t want to increase it’s power either! Tough decision here about Coartem. And a tough decision about how long I can keep such a high pressure job. 🙁

Hangin’ in there and fightin’ the good fight!

Michele

[Michele]

Hi Diamond,

I just saw your signature line with the dx of RA and Sjogrens. If you have any other palliative suggestions for these symptoms let me know! I wonder if you are also adding Restatis? Your apple cider vinegar recipe in another thread reminds me I’ve been slipping on drinking that every day, too! Good reminder!

G’night!
Michele

[A Friend]

@Michele wrote:

Hi Diamond,

I just saw your signature line with the dx of RA and Sjogrens. If you have any other palliative suggestions for these symptoms let me know! I wonder if you are also adding Restatis? Your apple cider vinegar recipe in another thread reminds me I’ve been slipping on drinking that every day, too! Good reminder!

G’night!
Michele

Hello Michele,

At my last two eye exams, the ophthalmologist encouraged me to read the research of a longterm controlled study (AREDS) for a serious eye condition with dry eyes as part of the problem. I read all of this, but found some private ophthalmologists who also had some impressive information. My eye doctor suggested I begin Restasis, and gave me a trial beginner kit. After a lot of reading on it, I decided to dig deeper. I believe there is a posted topic with a good bit of information found, which I posted on the BB a year or so ago.

With the seriousness of eye problems, the patient along with his/her physician needs to be the ones making decisions. And anything posted here or elsewhere on RBF BB by me is for informational purposes only, so we patients can learn and make the best decisions we can.

I’m sure in my own files I’ve saved a lot of information on this subject. There’s an indepth article in one of Dr. Mercola’s newsletters about astaxanthin study results and findings, and about its seeming outstanding protection for the eyes that you might appreciate knowing about. (I have a long-time close friend who is a compounding pharmacist that I brain-stormed with on the subject of Restasis versus a possible other course. I am making an appointment with another retinal specialist for my next appointment, and I look forward to hearing what she has to say, as well.) The Mercola
link pasted here:

http://articles.mercola.com/sites/articles/archive/2010/11/23/astaxanthin-the-eye-antioxidant-550-times-more-powerful-than-vitamin-e.aspx
The Most Powerful Nutrient Ever Discovered for Eye Health
Posted By Dr. Mercola | November 23 2010 |

[Michele]

Hi A Friend,

Thanks for the astaxanthin info. It was ironic as I was reading your link I was eating two fluffy poached eggs; the article said egg yolks are good for eyes. I also started taking Dr. Mercola’s Krill oil with 600 mcg of astaxanthin about two months ago. Same time as the start of Coartem…same time my eyes started getting rapidly dryer.

So did you end up trying the Restasis or is there something you found in your research that swayed your choice to explore other options?

One thing I have slacked on this summer was drinking freshly made green juice. Doc Z had us drinking juiced spring greens to stay alkaline. I just got tired of the same drink after a year and a half. I need to get that back into my routine along with the apple cider vinegar. Problem is I cannot stand vinegar of any kind.

Fortunately, the arthritic flare is only simmering this morning and not roaring. The fear that the unrelenting full body pain will return is never gone. I am going to hope for the best and do more detox and clean up the diet more.

[DiamondTNT]

I have decided not to do anything that would compromise my immune system as I feel I’m much better off in the long run to build it up instead, so, no Restasis for me. I will be going all out on a variety of antibiotics plus the MSM/DMSO IVs for the next few months and hope this will bring me to full remission. My Sjogrens is not all that bad with my eyes but, my mouth gets exceptionally dry, especially during the night.

Think I’ll go fix another apple cider vinegar and honey drink…

Best wishes to all going through this!

[A Friend]

@Michele wrote:

Hi A Friend,

Thanks for the astaxanthin info. It was ironic as I was reading your link I was eating two fluffy poached eggs; the article said egg yolks are good for eyes. I also started taking Dr. Mercola’s Krill oil with 600 mcg of astaxanthin about two months ago. Same time as the start of Coartem…same time my eyes started getting rapidly dryer.

So did you end up trying the Restasis or is there something you found in your research that swayed your choice to explore other options?

One thing I have slacked on this summer was drinking freshly made green juice. Doc Z had us drinking juiced spring greens to stay alkaline. I just got tired of the same drink after a year and a half. I need to get that back into my routine along with the apple cider vinegar. Problem is I cannot stand vinegar of any kind.

Fortunately, the arthritic flare is only simmering this morning and not roaring. The fear that the unrelenting full body pain will return is never gone. I am going to hope for the best and do more detox and clean up the diet more.

Michele,
About your question: So did you end up trying the Restasis or is there something you found in your research that swayed your choice to explore other options?

My reply is: After looking over the information about Restasis, I was reluctant to (as we say sometimes) “start down that road.” I began searching and reading options that had been shown to help with dry eyes, plus brainstorming with my compounding pharmacist. I had already found much information about the AREDs studies, but further had found information by a group of ophthalmologists who banded together and did some of their own controlled studies, and testing patients’ eyes for improvement. (During this searching time, I posted/pasted some of these in a Discussion Topic on the Board, involving among other things eggs and raw spinach, etc., for patients with stages of macular degeneration and dry eyes.) About this time, I received a notice that a Yahoo Group about Flaxseed Oil use (followers of the Budwig Protocol) had uploaded testimonials to the Files. And, can you believe, some of these were about eyes, dry eyes, and macular degeneration. Amazing testimonials. As you know, I’m sure, that’s a free group and if you’d like further information, send me a PM. Previous to this, I had also read elsewhere that some of the best eyedrops for dry eyes contain oils from essential fatty acids.

Regarding the Restasis, my pharmacist friend felt if I conscientously used the high quality dietary fish oils and diet items — and otherwise continued with healthy life choices — he felt these choices should work as well as the Restasis route. (This is a personal choice that each of us will have to make for ourselves, and is not a recommendation by me.) Since that time, so much has been going on (including a new computer system/program, and several months of problems with that, that I haven’t been able to locate our actual e-mails). I may be changing ophthalmologists, and plan to see a retinal specialist soon in order to become a patient of hers. I will try to remember to send a note to let you know how things are going and if she has anything new to add. I’ve been doing tons of reading recently, and believe I need to do more consistent detoxifying measures (along with taking the more excellent antioxidants for protection from free radicals from these measures… and just play everything by ear… one step at a time.

Sorry for the delay…

[Author]

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