LymeNet Flash: I was denied IV

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Posted by Health (Member # 6034) on :

I was denied IV here in Canada.

Lots more to say but wont post it.

I am going to fight this, I had a positive lyme
test, for chronic lyme, had the positive test in December 2005. Had untreated lyme for about 15 years, then started to treat.

Infectious Disease Dr said that I had enough orals for lyme to get rid of it, and said that I could see a 2 other specialist, wont post which ones,, I say I need to treat more,

He said IGENEX is not a good lab and so on and on, I will fight, only thing is what if the new lyme test I get done from IGENEX is negative?
I pray that it will be postive.

I will see if I herx on this Tetra and Tini,

ALSO, I have become SO much more sensitive to perfumes, I have severe asthma from them, never had it this bad. I am treating candida with nystatin and oil of oregano, but not getting better

I think this is a lyme thing?

Have been on orals so far for about 15 months, treated for babesia and lyme.

I had previously been on orals twice before, but stopped them after 7 months as wanted to treat with HERBS, wrong move, never recovered since

back on antibiotics, had stopped the antibitoics, the 2nd time for about 6 months,

I became sick from light, around this time, lyme treatment not helping with this, so was swithched to babesia treatment.

This helped the light, HOWEVER, I am still not better from light.Oh, and also became EMF sensitive about 2 weeks after I became sensitive to light, what more can drive me insane,

I wonder if the light is like this because I need IV? I am sorry for being such a mess with this post, I will try to make it better later.

I am typing this now on the computer in the light, and am having my left sided symptoms come out, numbness on the arm, OUT of it in the head/brain...

DUMB as can be in the light, the brain is affected in the light.

My LLMD has seen no one like me, that he treats, so he does not know really what to do with the light.

It is ALL me with this disease now, I am becoming obsessively CRAZY trying to find out what the hell or why the hell the light is not gettiong better.

I want to SCREAM because of the light, and wondering if maybe it is because I need IV for lyme?

I am getting retested for bartonella as I have this new rash on my bum and thighs.

I did 3 months of clindamyin/quinine, then lyme treatment, on orals, then back to clindamcyin and quinine.

I am so out of it in the head from the light,
In all the years I had untreated lyme and babesia, I now get sick from light over one year ago????

I am just loosing it, ready to rip the world apart.

I dont know if this makes sense, hope so, commments welcome.

Maybe I need to get another lyme test from IGENEX, and hopefully it may be positive, then go fight for the IV?

LLMD is not fighitng for me for IV because he does not know if this is still lyme. Here in Canada, things are not easy to get, the IV.

I am now put on Oral again for lyme, the Tetracycline and tinidazole, and getting Bartonella test, then see what this says,

then the Igenex test done. Maybe I still need babesia treatment, I think if the light improved with the babesia treatment, why has it not gotten all better if it was babesia?

I did total about 6 months of the clindaycin and quinine for babesia, broken up, 3 months, then later 3 months.
Why is the light not better>? maybe because I need IV, I am sorry

I am such a mess in this brain, cannot post that well but need help if anyone can.

I want to work! and live, not sit in my dam room in the dark room.

I am a mess. as you can see. I cannot edit this because I cant edit with this brain.

Trish

[ 05. March 2007, 11:11 PM: Message edited by: Health ]

Posted by buggedbylyme (Member # 9556) on :

Trish,
I don't even know what I can offer you right now.

Not any wisdom on any additional things to do. Just wanted you to know that I truly feel bad for what you are going through right now

and I hope there is some knowledgeable people on this board that can help you.

Hang in there, I'm sure there's some help out there on its way.

Don't give up. I know that's easy to say, because I'm wanting to give up all the time. This is all so hard.

Trish, I hope someone can encourage you with some advice and direction soon. [Smile]

Posted by Cobweb (Member # 10053) on :

And I was having a pity party because my insurance will only cover a month of IV. When I asked the nurse if it would do any good- she said-well-it's better than nothing.

Sorry to hear you've got such a roadblock. But I do know there are some here that purposefully chose NOT to have IV and they still got better-so there's hope.

Carol

Posted by Lymetoo (Member # 743) on :

Trish, I'm so sorry things are this bad for you. Do you think the light thing has anything to do with your taking the tetracycline?

I couldn't quite get the timeline, so wasn't sure if your symptoms began before taking the tetra.

I am one who got well on orals, but some people do need IV. I think you get well quicker on IV, but still think you can make good progress on orals.

Any chance you can stay away from the ID ducks?? They can make a person feel so crazy!! [Mad]

And in answer to your questions, light and sound sensitivities are both Lyme symptoms.

Any chance you can see a dr in the States??

Here's hoping someone has some ideas for you! I seem to be blank on this one! [group hug]

Posted by LookingforHope (Member # 9680) on :

I just wanted to say I am sorry to hear about you doctor not doing the IV, I hope you are able get the treatment you need! Let us know hoe it goes! [group hug]

Posted by LymeLaura (Member # 6624) on :

How about IM Bicillin LA. Lots of people are having very good success with it! You will need a doctor to prescribe, though.

Posted by Health (Member # 6034) on :

Thanks everyone,

I have used many orals, but still not well.
I am allergic to Penicillin, and tried the Ceftin, but had a bad reaction to it, it was not a herx, my insides became raw like.

I have used

Biaxin/Flagyl
Azithromycin/Flagyl
Doxycycline/Flagyl
Clindamycin/quinine for babesia
NOW using Tetracycline/Tinidazole

Minocycline/Plaquenil - stopped the plaquneil because I was soo sick, I tried half dosage but still sick, almost like I was off antibiotics, and my immune was lowering.

I now think? possibly it was a strong healing with the plaquenil, I am going to try it again.
I just was so sick, I had headaches sometimes that just did me in, I was in bed all day

someimtes, Will try again, see how I do.
I was never this sick with flagyl or now the Tinidazole, I got sick/herxed, then better.

I am now on the Tetracycline/Tinidazole.
I am on day 4 but not much happening.

SOmething is wrong, like I am out of balance, When I take the antibiotics, it is like they are not going deep inside where I need then to to,

Where I am weak, from deep within. I am not sure if this is because I need IV because the IV goes deeper? I dont know, i just have never felt like I do now, something is wrong.

I am being tested for bartonella because of the red streaks on my body, but I dont think bartonella can make me as sick as I am.

I am weak, Well I will see how the Tetra and tini goes. I dont think the Tetracycline is making me sick from light, I was sick from light before started the Cylines, so because the light thing is from lyme, tetra should get rid of it I hope.

I dont have much choice now for other orals. I have ketek, anyone know of others? Allergy to penicillins and reacted to Ceftin.

thanks,

Trish

Posted by Lymetoo (Member # 743) on :

It may have been the Mino that caused the headaches and made you "sick". It's pretty rough stuff because it gets into your brain.

Bartonella (esp when mixed with Lyme & Co) can make you very sick.

Hope you find the solution soon!

Posted by KiwiLife (Member # 11285) on :

Hello Health,

See my March 8th post "Symptoms charts to convince your Dr"

I can send it to you if you think it may help influence your Dr. Ask for IV treatment under "research/trial" which is how we got it approved.

Best wishes and God bless you, Paul

Posted by humanbeing (Member # 8572) on :

Maybe you could have your blood sent to Stonybrook Labs in NY or the Bowen Lab...This could give you more ammunition with your duck...

My ID doc sent my blood to Stonybrook and it came back CDC positive. This is how I got insurance to pay for IV.

Hugs and Good luck, you are not alone.
Kim