posted
Saw another eye dr today in a certain large city, at a certain large hospital,a few hrs away. The only thing I am going to take from this is more stuff for my lawyer for disab. I mentioned lyme
and thought I was going to get my mouth washed out with soap. "Lyme does not effect the eye". This is the third one I have seen in three years. The first one gave me steroids which almost killed me, before I knew it was lyme, the second
didn't know and referred me to the third. I have had no insurance until this year. Couldn't afford unaffordable care act and pay out of pocket to see my lyme dr and get treatment too. Knew that insurance would not pay for jack squat. I am to
believe that there is no hope for my eye, that there is scar tissue now but have to have a ct scan on head and lungs.My c4a was high and indicative of mold I said. I mentioned that maybe
I have crypyt or histo in my lungs and maybe eyes, maybe fungal because I have had a fungal right foot for 15 years and nothing has worked.
Actually right now I have been taking fluconazole and no itching. Sometimes I want to rip the skin off of my toes.I probably still have the psuedo
tumor behind my eye but the swelling is much less but vision is less than 3 yrs ago too. It is soooooo discouraging to hear from drs saying that treatment for lyme is only 4 weeks and chronic
lyme is controversial. I saw the guard go up so fast. I am surprised that I didn't get slapped.He mentioned sarcoidosis which seems like that thing they pin on people to make them shut up. Where does it come from, how do you
treat?Idiopathic?But here it seems that the eye and lungs are related. Why can't it be like that for lyme? The one dr said that you get a diagnosis from your rash when you are bitten.
I guess if you don't see one, it doesn't exist(lyme). You don't have it. That is what they are telling these drs. They need to also answer the question of if a tree fell in the forest, does it make a sound? The answer is NO, IT DOES NOT. Time for bed.Sick of stupid.
Posts: 294 | From southwest mi | Registered: Dec 2012
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posted
What do you mean by pseudo tumor behind your eye? Has that been seen on any tests? Have you seen swelling go down?
I know it's very frustrating, but you gotta know the game that's going on - they're all told to stand down - the insurance companies hate it, the docs make a lot of money off of us, etc - it's all BS - just know that.
And try to get your needs met. Best done with Lyme-literate people. I don't know whether your local support group or state Lyme group can recommend a Lyme-literate eye doc for you -
Now for eyes - I drink mangosteen juice and that stopped all my eye symptoms. I know we're all different, so you just gotta see what works for you. Yes, the Lyme bacteria hide out in the eye and yes, they inflame nerves to the eye.
I like the Mango-Xan version of the juice - it's the most tart version. You can find it in healthfood stores and online. It's anti-inflammatory - it has 43 xanthone compounds in it from the ground-up rind that scarf up all the free radicals created by inflammation.
I drink around an ounce a day. If you try it, start small and see what happens - it can be powerful.
Back to those doctors - once you get what's going on and can answer back, I do! It's fun. I bring them brochures even! They get the messge from me real fast they can't mess with the truth of what's going on.
So I say study your facts about the bacteria to be able to answer them, if you want to. Like it's a fact that Lyme hangs out in the eyes and inflames the nerves to the eyes.
What if you could quote the studies to them that show that?! Like look up the studies, print them out and bring them to the appt!
But maybe don't waste your time - go find the people who know what's going on.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I had an mri done 3 yrs ago and that is what they told me and gave me steroids. I have to get one
redone. I hate those tests. I will have to be sedated. I had a migraine at the time, no meds and a sound sensitivity.
I tried 2 bottles of the mangosteen and I didn't notice anything. I did the Stephania root tinctures as well. One can see that the swelling
has gone down over the past three years but the vision is worse. I have read many lyme books. Believe me, I am ready with an answer, but they don't want to hear it. He is older too and had a
whole list of eye diseases that he deals with. Lyme was not on them but I thought maybe he just couldn't write that. I didn't expect such
opposition. Even people with Aids have eye issues along with everything else, it can come with disease. I don't understand how one can say that the eyes and the lungs may be connected with
sarcoidosis but won't make any other connections. I hope he does not make trouble for my lyme dr. It is my last hope. I told him that my bad eye started with a horrible stye that was there for
months, finally went away and came back and I was getting one on my good eye and recently it has been going away with antibiotics from the llmd.I guess I shouldn't expect much from him. At least
maybe I can use it for my ss file in which the appeal has been in the pending file since the beginning of the yr(have a lawyer). I guess I can email the state group again and ask for another
list for lyme literate eye drs.There is no local group here nor where we used to live and the woman that I spoke with on the phone who used to
lead a group here said to be careful about bringing up lyme, esp when making an appt somewhere. Too bad one has to tiptoe. I don't like to tiptoe.
You know, I started to tear up when he said I will never be able to see better out of that eye again and then I thought what does he know, he doesn't even acknowledge lyme.
The original mri said that there was maybe idiopathic inflammatory(Tolosa hunt) but also said it could be granulamatous or lymphoproliferative process. The steroids really
hurt me. My lymphocytes have been rock bottom for the last three years and now my red blood cells are there too.It goes into my cavernous sinus.I have a lot of sinus issues.
I also told his assistant beforehand that I have light, sound and smell sensitivity, tinnitus and hyperacusis. I think he thinks that is all on my list. He has no idea but it's not worth telling him my long list which has gone down by a few.
Sorry this is getting so long. I was going to say that I think my swelling has gone down due to
avoiding trigger foods that keep my inflammation high in my body but not the direct reason for the mass behind my eye which has now left scar tissue.
Posts: 294 | From southwest mi | Registered: Dec 2012
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
aw I am sorry it went this way!!, yes, I think he has no idea about if you will see better. he sounds like a typical dr- full of limits. we need those that go the extra mile, that search on their own, that actually WANT to make a difference for people. one that actually know a specific specialty inside and out.
a dr like that doesn't exist near me, and I think that a dr like that may be one in 1,000,000,000,000.... but there must, just must be someone out there that is qualified and cares! ??
I have not lost hope in finding a good dr that can know what is going on with my eyes , but I have come to realize that I probably wont find them . I think one day, if it's meant to be, they will somehow pop into my life.
you know I am broke, like you, but I feel a little better knowing that it happens to the extremely rich too- like Yolanda Foster not finding the answers she wants either. not that it makes me feel better, but that I don't feel as bad for myself.
hang in there!
cry to let off the stress and tension , but never lose hope.
I use Tee Tree oil for fungus,- would that help your toes?
I cannot stand most drs. I am looking for a new GP because I am so tired of her not acknowledging lyme. I saw on my chart, "self diagnosed lyme disease" !! HA!!!! I would love to smear my Igenex test all over her face.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I actually got cursed out and thrown out of a doctors office. I left squalling in tears.
some of them are pure idiots.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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I have used tea tree and many other oils.Actually most oils don't bother my nose in small doses. I especially love rosemary. I have used so many things. I could name off a long list. I have bought so many things off of Amazon
and the health food stores. My foot has not been itching so much lately since I have been using two kinds of antibiotics and an antifungal(fluconazole) so it
could finally be hitting that. I wish it would get to my lungs and eye. I think the there is something fungal in my lungs. I had an xray a
couple of wks ago and have not heard anything. I don't know if it would show up on an xray. Dreading another mri. I hate those things. I couldn't stop shaking last time.
I am thankful for those in the public eye for coming forward with their lyme stories. It is like putting your head on the chopping block for sure if you don't have a solution in a couple of months and are well on your way to the good life again.
I hope you find another better dr too. Posts: 294 | From southwest mi | Registered: Dec 2012
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You know, we can go untreated,misdiagnosed and ignored, wind up on disability and those dr's can work long past retirement age to support us.
Somebody will have to pay for disability. Only those who are working can pay in. How about that?
Sound good? There will be a bunch of us too. Maybe they will need to pick up a second job as well. Some might want to rethink their politics.
I will try another eye dr,(now that I have insurance from my husband's work) that was suggested to me and I had actually had an appt for once. I couldn't afford it and my other lyme treatment. Hopefully this one is better and isn't scared of the beast.
Posts: 294 | From southwest mi | Registered: Dec 2012
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
now that you mention it, I too have some scaling stuff on my one toe. I try to ignore it, but it does get quite itchy sometimes. I considered it might be tick related briefly, but maybe there is more to it?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Thanks tutu. I was doing thieves. I made my own with lemon,rosemary,clove,cinnamon,eucalyptus and almond oil.I put it on more than my feet for quite some time. I am afraid it just wouldn't work on my foot. It is really my entire foot. The skin peels.
It used to get thick(bottom) and I would have to cut it with nail clippers every week and the skin was sharp and would split. Thankfully I don't have to clip it anymore but it still peels. It is
on the same side as my bad eye. My other foot is perfectly normal with hardly an issue.It's funny how this eye dr thought it was irrelevant to bring up a foot issue there at the eye dr. Eyes
and feet go together with diabetes. Isn't it all a part of fungus? Isn't that with diabetes?He was open to eye and lungs. Forget feet. Sorry I keep
this going. I am tired but feel like climbing the walls at the same time. I hate feeling so stuck.
Thanks, I hope I can find help for my eyes too. They have been very helpful to me in the past. I am thankful for them Posts: 294 | From southwest mi | Registered: Dec 2012
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Sorry about the eye doctor. My eye doc actually codes my insurance as Lyme so they pay for the exams.
She keeps a careful watch on my eyes, because she knows Lyme can harm them.
She also said anytime she or a family member gets bit by a tick they go on doxy--they don't wait another day.
I will keep this eye doctor!!
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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posted
Wow, that's amazing hiker. You are lucky. We need more of them.
My cousin (whose mother died of lupus but I think really was lyme, looked like she had Aids)has a daughter who goes to the eye dr that is part of this place where I went and they give her a presrip of low dose doxy everyday. I wonder what they call hers.
Called my dr to see if they got the results of my lung xray that I had done two weeks ago and she said yes. I asked if there was anything that I
might need to know before my next appt in June(unless they have a sudden opening)and she started reading it and mentioning calcification and lymphs and then stopped and said he will be
back on Monday. This is probably where the fungal comes in. My mom and aunt have it(granulomas).My aunt was first told she had histoplasmosis. My grandma died of breast cancer and my aunt had it and so far is cancer free from a partial
masectomy. On my first mri, one was a possible granulamatous disease. Can these left untreated lead to cancer I wonder? No wonder nobody wants to deal with it. Too much money to be made for cancer.
I had the 23andme done and am waiting. I imagine mine saying (after I plug it into a health reader site) that I have more mutations than the average
person.At least it strikes me as something to laugh at.I did get part of it that says that I have more than the average neanderathal(2.9) That might be part of the problem. They evidently didn't survive.
Posts: 294 | From southwest mi | Registered: Dec 2012
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posted
Just a quick comment - regarding your last comment here about the 23andme test - you can send results to geneticgenie for interp.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thanks. My dr mentioned livewello. How is that one?
Posts: 294 | From southwest mi | Registered: Dec 2012
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I did livewello, but you still need to interpret a lot. i am glad I did it, but I still needed apt with a place that can say immediately what I need to take/change/do, etc.
I made an apt with Tree of Life and I have that today at noon! I sent them my 23andme info and they sent the report to my email of their interpretations - within HOURS!!!
I have a lot of doublel mutations, and surprise surprise they are most in all things I have greatesnt trouble with- joints, heart, anxiety.....
so so interesting. I am so excited.
I feel some light at the end of the tunnel!
and only $60 over the phone for this. or Skype. that is for 1 hour.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, hiker- you are so furtunate to have a dr that thnks that way! I would cry with happiness if I could only find one dr that did that for me. everywhere I go they are so stingy and fearful.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I can't wait to do the 23andme! And I'm going to use Tree Of Life too.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
O MY GOODNESS!!!!!! I just had my meeting. so much is now explained! things since childhod. all my anxiety is genetic. and all this other crap, that is managable with suppliments. it is amazing!
the NP at tree of life is a FOUNTAIN of brains. I am so super excited I can barely think of anything at this moment. it is just amazing all this genetic stuff. he says the reason I can't shake the lyme is all my mutations causing it. and I could actually SEE this with my own eyes.
I feel like a new person already!!!! YAY!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Great - explanations and what to do are so important for us to obtain.
My doc showed me the pathway of the SNP that keeps neurotransmitters hanging around, meaning they don't clear as quickly as others' neurotransmitters do. Meaning our moods last longer - the highs, the lows.
And I think that affects people's behavior as they instinctively manage that.
It'll be interesting to see what supplement follow-up does.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Yes, I imagine I have a bucket load of mutations. I am sure that is half of the problem. My dr is the one who mentioned livewello and showed me the
colorful packet of what one looks like, no personal info given out. This sounds like it would help him more though.I can't wait to hear more lisak Posts: 294 | From southwest mi | Registered: Dec 2012
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