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10/08/2011 06:51 AM

Very Quick Reaction

Explodo
Posts: 42
Member

So early this week I called a LLMD and spoke to her for 45 minutes or so about what was going on with me and what should I do. She immdiately set up an appointment for friday to examine my "Emergent" conditions and decide what to do next.

So yesterday, I went to the appointment and was poked and prodded, asked at least 300 questions, had past blood tests examined, you know the drill.

After 2 hours, she says to me "Mr. Ex, I'm very worried about your vision and general physical health. I'm reccommending we start a picc line today and begin treatment. We have to stop your brain and vision from deteriorating further"

She then says, I'm clinicly diagnosing you with Lyme, BArtonella and erhlicia, Given your medical history, tests given and physical symptoms, there is no doubt that lyme exists and you have muyltiple co-infects"

She then went and called BC/BS who suprisingly said "Absolutely, go ahead with the proceedure, we will approve 2 months of IV and 4 months of oral ABx"

This shocked me, BC/BS sent the approval by fax within 10 minutes and I was off to the hospital to get the picc line. This is where it gets interesting....

Every nurse/IV tech/Picc tech I was in contact with spoke of sisters/husbands/wives/children who were infected and had got huge relief with what I was about to go through. It wasn't going to be pleasant by any stretch, but this doc had a long history of making people better.

Not one doc seemed to think much of the IDSA and the political nature of their guidelines. This is a cmpletely different experience than the other hospitals I had been going to. These people believed me, and they had personal experience to back it up.

So now I'm taking Doxy 3 times a day and 4 days on and 3 days off of IV Meds for the next 2 months.

My wife finally said to me last night "I knew it wasn't in your head deep down inside, but for a whil;e I thoguht you might have been going insane. I'm sorry"

I think I cried for half an hour. DOn't tell anyone, it would impact my mancard status.

I would like to thank this board for getting me on the right track and providing the data I needed to find the right people.

I am forever in your debt.

Splodo

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10/08/2011 09:59 AM
rowergirl2010
 
Posts: 808
Member
I'm an Advocate

You got very lucky to met such an experienced LLMD who knew the correct place to send you for further treatment!

It is a real relief to finally have a reason for all that this torture and a route to take back to our lives. They are right it won't be easy by any stretch, but knowing what you got and how to treat it is a step in the right direction.

I talk to everyone I know about my lyme and many people know someone with it. Though many others do not and kind of look at me like I am weird! Thats alright though I am getting better and learning through my experiences while others around me choose to continue to discount my diagnosis.

So glad your wife now truly believes and you have a great doc!


10/08/2011 04:46 PM
Bettyg
 
Posts: 32201
VIP Member
I'm an Advocate

WOW SPLONDO; excellent! so happy you got a good dr. who was efficient and got you immediate help.

GET A COPY OF THAT FAXED APPROVED BY BCBS!! THAT'S a good start for you.

so glad your wife has been supportive too.

please PRIVATE MESSAGE me with the full name/city ofthe llmd you were able to get in FAST! i'm this board's llmd coordinator; want to make sure i have the info, and will note about the prompt action you got, etc. big thanks for helping me, help you/others Wink

hugs/prayers on the road to REMISSION.

bettyg, llmd coordinator, head leader, iowa activist


10/08/2011 09:58 PM
Avalon
Avalon  
Posts: 371
Member

Wow! Congratulations!!! You must feel like someone hit you with a truck ... in a daze??? Isn't it wonderful when you are finally believed??

At my last appointment with my Heilkunst doctor I asked her how long I had been seeing her for treatments and she said it has been five years but 3 1/2 to 4 years for the actual Lyme treatments.

The first year I was so sick she couldn't start Lyme until she had my system built up to accept it. And my thoughts were, how wonderful is it that this doctor believed me, validated me, and let me know it wasn't all in my mind!

More then I can say for my medical doctor who was my doctor since I was born and should have known better then to believe I would make this stuff up.

It's really a wonderful thing when you realize someone believes you.

yay you Smile


10/09/2011 05:41 PM
Explodo
Posts: 42
Member

Quick update, second full day of IV Meds. I've been sicker than a dog for most of it. My sweat smells funny...so does my uric output. What the hell? is this toxin coming out of my body? Also started taking 400 mg of doxy a day (200 morning, 200 evening). Don't know which one makes me feel so bad. I guess this is the start of the getting worse before getting better.

Definately didn't waste any time in getting there.


10/09/2011 05:54 PM
goobered
goobered  
Posts: 216
Member

Splodo,

I have been on IV meds for 3 months and am still quite nauseated. But the nausea started with orals. I did those for 2 1/2 years! Then I had a year of IV chelation. (all on BCBS, by the way Smile )

3 years of nausea with frequent vomiting the 1st 2 years! The vomiting has slowed waaaay down, thank God!

I have the smelly sweat...the days that I do sweat. But the odor is quite strange. I believe it is toxins coming out.

With the Doxy, make sure to take it WITH food, but definitely NOT dairy. That will make you very sick.

I am on Vancomycin. My doc has me take Zantac and Benadryl 30 min prior.

I was on Zithromax also. I started with Rocephin, but had an allergic reaction.

What are you on?

I am glad you have a good doc and wife!

Goob


10/09/2011 06:00 PM
rowergirl2010
 
Posts: 808
Member
I'm an Advocate

Water, water, water! Drink all day long and eat well. Antibiotics dehydrate you and your liver is working over time to filter out these meds. Your LLMD is attacking this stuff hard! Doxy and IV meds. You probably have a ton of built up toxins from die off of Lyme cells.

When we are sick our cells do not dispose of things as quickly so the medicine is encouraging such. Heating pad and ice packs will help with the side effects. Hot tea with honey will help sooth your throat and chicken noodle soup really does improve you health, recent study. Did someone really have to ask?

Get some sleep your in for a long haul!

Post edited by: rowergirl2010, at: 10/09/2011 06:02 PM


10/09/2011 06:01 PM
Explodo
Posts: 42
Member

I'm on Rocephin 2 g, 2 times a day. I will say this, I've had a good strong headache every time I've taken it for about an hour afterward. Then it subsides and I just feel nausated. I hope this is a sign of the medicine working.

10/09/2011 06:12 PM
rowergirl2010
 
Posts: 808
Member
I'm an Advocate

All I could find is that it can cause headaches and stomach issues among other side effects. Also don't mix with calcium.

If you can stand it eat something an hour or so before your dosage and see if that helps.


10/10/2011 06:39 PM
goobered
goobered  
Posts: 216
Member

Both that AND the doxy can cause nausea. EVERYTHING I have been on has caused headaches.

You may want to ask your doc if you can start lower and work up on either/both.

I started on Doxy 100 mg twice daily and built up to 200mg twice daily. Of course, with the limited time you have been approved for, you may want to cry and bear it! I promise, NO ONE who has been through this would dare touch your man card!

On Rocephin, I was on 1 gm twice daily, but my doc did NOT cycle it. I think cycling is a better choice from what I have read. Outcomes seem better. I do not remember what I read about doses being different when you do this. Good old Lyme!

But it seems that you found a good and caring LLMD, so I think I would trust her. Smile

If you do not have anything for nausea, ask your doc. It makes a huge difference if you progress to vomiting like I did. I have to have IV Zofran and Phenergan to alternate.

Hope this helps. It is a rough road, but you are on the right track!

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