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baileygirl76
Regular Member


Date Joined Sep 2008
Total Posts : 123
   Posted 3/26/2009 7:05 PM (GMT -6)   
Hi,
Here is my story. I used to post more but usually I lurk.

I am a 32 year old mother of two (ages 2 & 5). I am lucky enough to be able to stay at home with my girls.

I developed a swollen knee in July 2008.

I was doing a lot of running and was trying to master an 8-min mile.

I did it and got a swollen knee.

I had broken my knee while in high school so I thought this was a sports injury.

I had no previous symptoms or remember a tick.

I went to the doc and her first thought was Lyme.

I tested positive on all three bands on the Western Blot.

My symptoms after the knee swelling were tingling... lots of it. I was also very tired.

I was treated with Doxy. 100mg 2x a day for 28 days. I felt better.

about a week later I actually found a tick on me!

I ran to the doc and was given one 200mg dose of Doxy.

After two weeks my symptoms returned.

Tingling, anxiety, panic at times, fatigue... Awful. I was so emotional.

I went back on Doxy 200mg twice a day for 2 1/2 months.

I stopped and was feeling better. Truth be told, being on antibiotics that long was scary to me.

I wish I stayed on at this point.

I saw a LLMD and she wanted to add Flagyl but I was scared.

I am not one to even take Tylenol for a headache and drugs freak me out.

My family doc that diagnosed me with Lyme urged me to stop.

I felt good for three months.

Every month before I got my period I would feel worse than normal but it would pass.

After the third month I started exercising a lot more.

I was also dealing with a lot of stress.

We got a big snow and I shoveled the whole driveway which was a lot of work. I felt awful.

I started getting really tired during the day.

I still pushed through and exercised but it got to be too much.

I was also feeling depressed and had completely lost my sex drive.

Well, I finally went to the doc.

She ran every blood test under the sun and everything came back normal except for the Lyme.

I was positive on two bands (IgM).

Now I am back on Doxy. 200mg 2x a day for who knows?

I am already starting to feel better.

My main problems are that my eyes are sensitive to the sun (and my eyes are very dry so it makes it all worse), I get tired during the day and I know you all will understand this... I just don't feel like myself. I feel off and funny sometimes.

Today I started exercising again and it felt good.

I am going to see an Infectious Disease doc next week. I know, I need a LLMD...

I was recently tested for co-infections through LabCorp and they were all negative.

I respond very well to oral meds. Can you offer any advice??

Currently I am taking the Doxy 400mg a day.

I also take a Multivitamin, Vit C 500mg, Vitamin D 3000IU, Florastor, 2 Culturelle, 1200mg Fish Oil, B-12 & an extra Calcium, D, Zinc, Magnesium.

What else should I take?

Thank you so much for taking the time to read!


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 3/26/2009 7:25 PM (GMT -6)   

Hi baileygirl76.  I am sorry your symptoms are back. 

I recommend that you see a Lyme doctor so you can get properly treated.  I don't believe LabCorp is a good lab for co-infection testing.  A Lyme doctor will likely use a better lab for testing.  Then the best protocol can be chosen based on your results and the doctor's experience.


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/27/2009 2:00 PM (GMT -6)   
bailygirl76, Do yourself a huge favor and skip the infectious disease doc who will most likely know nothing about what is really wrong with you and will steer you in a direction you probably will regret going. Save yourself much anguish and bite the bullet by paying to see a LLMD. The more time you waste in tryng to find a doc to help you that will take your insurance the worse you will probably get. Take that advise from one who has been there and done it all. Blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline 9/08
modified cowden protocol 3/09
Outstare The Darkness--The Light Will Come!


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 3/27/2009 4:25 PM (GMT -6)   
I agree with minerals - be careful of what doctors you are seeing. Get the book Cure Unknown so you understand the discord in the medical community about how lyme should be treated. Some believe it is not a chronic disease and can be cured in a short course of ABX. If you wind up in the office of one of these doctors, you will be told your symptoms are due to something else like RA or lupus. You could then be started on steriods which would suppress your immune system making it very difficult to treat whatever infections you still have from the tick bite.

You probably have a co-infection as most people do. Bartonella can cause the symptoms you have with your eyes. It also causes a detached, disconnected "out of body" feeling and other emotional problems like depression and irritation. There are 30 strains of bart and the labs only test for 3 so you need a good LLMD to diagnose you.

I do not drink smoke etc and felt the same way as you about drugs. I am also very sensitive to chemicals and can have adverse reactions to them. Doxy has no really dangerous side effects like some of the ABX people have to use when they become really sick. You just need to be careful of sun exposure as you will burn very easy. And you don't want to lie down for an hour after taking it to help prevent acid reflux. Although I hate being dependent on drugs to stay healthy, the alternative is worse. I hope with the help of the LLMD that I will eventually be cured. You should be symptoms free for two months before you quit abx. Good luck.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 3/27/2009 5:20 PM (GMT -6)   
Glad that the ABX are working so quickly.

The only thing I'd add is a probiotic.

Drink lots of water, eat mostly fruits and veggies.

Doxy can cause the light - sensitivity. Be sure to wear sunglasses -- not in the rain -- but on every other day.

Hang in there. A strong immune system can beat any infection. You just need a little extra help to get there -- lyme is a virulent thing.

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 3/27/2009 10:47 PM (GMT -6)   
baileygirl,
One of the most frustrating aspects of Lyme for me was not knowing anything about it. The more research I do to be more informed, the better I feel.

Get the books people suggested and read the Burrascano guidelines. It will really help give you a good idea about what way to go with suppliments and your diet. I agree with hoping about the fruits and veggies and water. But stay away, or really limit the fruits highest in sugar content. Your GI tract and immune system will thank you.

And keep asking lots of questions. I know I still have a zillion!

best wishes to you,
Lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
1/29/09  Added: Rifampin 600mg- Ehrl, Lomatium 15dropsBID-parvo, andrographis 15dropsBID (super yuck!)-LD, Alinia-cryptosporidium.   


baileygirl76
Regular Member


Date Joined Sep 2008
Total Posts : 123
   Posted 3/31/2009 7:11 PM (GMT -6)   
I saw a LLMD today. Dr. S in MD. It was great. He is keeping me on the Doxy 5 days a week. He added Ceftin for every day and I am to take Flagyl 2x a week. I think I spent about an hour with him.
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