Update: Finished with Lymes Treatment not feeling any better

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LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 468
   Posted 9/8/2010 1:24 PM (GMT -7)   
Hi everyone,
 

I posted awhile ago about testing positive for Lymes. My dr said that I did have all the symptoms of Lupus going back as far as 4 years ago but since I tested for lymes I had to treat for it (4 years ago I had a false positive for lymes). I have finished my 21 days of Doxy antibiotic treatment and I have noticed that nothing has changed. I still have all the same symptoms that I had prior to the treatment. I have to go back to Dr on Tuesday and I am so nervous and confused. I was hoping I had lymes so that I could be cured and finally feel better. After stopping the treatment I am sad that I still feel sick. The other day I went to an outdoor event with my parents and I could barely walk around because my joints ached so bad but I did what I always do ignore it, not complain and go about my day(of course somed days is easier than others.

 

Anyways I just wanted to post because this forum is really the only place I feel understands. Hopefully I can get answers on Tuesday.

 

Hope you are all doing well.

 

 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/9/2010 3:05 PM (GMT -7)   
Hey lawchick! Sorry to hear you are not feeling better! Please let us know how your apt goes on Tuesday! Will be thinking about you and hope something will change soon so you feel better
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/11/2010 4:16 PM (GMT -7)   
LAWCHICK said...

I posted awhile ago about testing positive for Lymes. My dr said that I did have all the symptoms of Lupus going back as far as 4 years ago but since I tested for lymes I had to treat for it (4 years ago I had a false positive for lymes). I have finished my 21 days of Doxy antibiotic treatment and I have noticed that nothing has changed. I still have all the same symptoms that I had prior to the treatment. I have to go back to Dr on Tuesday and I am so nervous and confused. I was hoping I had lymes so that I could be cured and finally feel better. After stopping the treatment I am sad that I still feel sick. The other day I went to an outdoor event with my parents and I could barely walk around because my joints ached so bad but I did what I always do ignore it, not complain and go about my day(of course somed days is easier than others.

Anyways I just wanted to post because this forum is really the only place I feel understands. Hopefully I can get answers on Tuesday.


Dear LawChick,

I sympathize with you deeply because I too have both lupus and Lyme disease. I just had to jump in here to address two things you said in your post that stood out to me (with bright red flashing lights!):

1. You say you had a "false" positive for Lyme disease 4 years ago. Why do you think it was a false positive? I'm not a doctor, but just the fact you have Lyme now makes me think that it probably WASN'T a false positive 4 years ago. I've had Lyme disease for over 7 years for sure, since I don't know when I was bitten I'm not sure just how long. I've heard of people who've had it for decades before they were actually diagnosed. Lyme is NOTORIOUSLY difficult to diagnose.

2. You say you finished 21 days of doxycycline. Did someone (mistakenly) tell you that 21 days of antibiotics would completely get rid of Lyme disease? Because unless you take doxy within the first couple of weeks after being bitten, you will likely need more than one single course of antibiotics to get Lyme under control. You can't eradicate it, just beat it down to the point where your own body's defenses can deal with it.

Most people with Lyme that I know about required many, many months of antibiotics to make any progress, and doxy is just the beginning. My sister-in-law took various antibiotics for 18 months before her Lyme was in remission.

I was just diagnosed with Lyme in January. I took doxy for 2 months, then switched to zithromax, added Alinia and Mepron (because the tick that bit me also gave me Babesia), then did IV Rocephin for 7 weeks (until I ran out of money....my insurance wouldn't cover it). I actually finally started to feel better on IV Rocephin (my brain fog even got better!!) but I can't afford it right now so I'm taking Suprax (one of the oral versions).

Here's a link to a very inspiring story of a woman who got 100% well on IV Rocephin, it took at least 9 months; she was extremely ill from Lyme, near death actually, and many of her worst symptoms were neurological (Lyme in the brain is the worst, and that's my problem too):

www.lymeneteurope.org/forum/viewtopic.php?f=10&t=157

Well, the LymeNet Europe forum where Sarah's story is posted seems to be unavailable right now but maybe it will be up later....?

Another helpful place to go is www.lymenet.org/.

Anyway, I'm currently taking Suprax, zithromax, Alinia, and Mepron TOO....4 antibiotics simultaneously! And this is not at all unusual for people who have Lyme disease!! Naturally I have to take lots of probiotics too! tongue

Is your doctor a Lyme-Literate doctor (aka LLMD)? If not, please, for your own sake, try to find a doctor who is an *expert* on Lyme disease. Please be aware that the need for long-term antibiotics has become a political issue in the medical community, even though studies have proven time and time again that most people don't get well on 21 - 30 days of antibiotics.

The people in the Lyme disease forum here on Healing Well will help you, and they will answer questions. There's a GREAT bunch of people on the Lyme forum, just as the people here in the lupus forum are a wonderful group too! I hang out in multiple forums on Healing Well because I have so many autoimmune diseases (Lyme disease triggered at least 3 of them plus my fibromyalgia).

Anyway, this is a really long post (because my heart really goes out to you!) and if you want to email me privately to hear more, please feel free to do so. I hope at least some of this is helpful to you. You will be in my thoughts and prayers!

(((((hugs)))))
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 9/11/2010 5:38:52 PM (GMT-6)


LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 468
   Posted 9/11/2010 8:23 PM (GMT -7)   
Hi Joane thank you for you post, I appreciate it. I guess I think it was a false positive 4 years ago because after further testing my DR found that I did not have lymes disease and they took me off the treatment. Also that was the same DR who suggested Lupus.

I did go to a lymes specialist and he read off a list of symptoms that someone who went this many years of un diagnosed lymes should have and I had none of them.

I guess I thought 21 days of antibiotics would help because I have known many people who said they felt better after being on it a few days. Also my DR warned me if I started to feel better a week after treatment that I must continue he said many people stop. I guess however that could be because those people were diagnosed early on.

4 years ago when I first got sick my symptoms matched lupus not lymes. I had the rash on my face and a pos ana along with joint issues (which is a lymes) symptoms.

Thanks again for being so sweet. I just hope something changes because I decided I'm going back to school to become a licensed psychologist and I'm gonna need all the energy I can get.

Post Edited (LAWCHICK) : 9/11/2010 9:26:48 PM (GMT-6)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/11/2010 10:00 PM (GMT -7)   
LAWCHICK said...

4 years ago when I first got sick my symptoms matched lupus not lymes. I had the rash on my face and a pos ana along with joint issues (which is a lymes) symptoms.


LawChick, I totally understand! And it can be so confusing because a lot of people (including doctors) don't realize that Lyme is the great imitator....it can mimic many different autoimmune diseases, including RA, lupus, MS, fibromyalgia (not actually autoimmune), and even ALS (aka Lou Gehrig's disease, I'm not sure if that's autoimmune?).

You might want to read this essay (a bit long)....it really opened my eyes to the fact that different people show different symptoms with Lyme disease, which is what makes it so hard to diagnose:

When to Suspect Lyme

and here is the story of a veterinarian who was first diagnosed with MS, then found out he had Bartonella, which is a co-infection of Lyme:

www.uvaldeleadernews.com/articles/2008/11/17/news/news1.txt

Good luck to you! Let us know what happens on Tuesday!

Take care,
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 9/11/2010 11:04:50 PM (GMT-6)


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 9/12/2010 6:38 AM (GMT -7)   
Hi!
I am sorry you are discouraged, but it is good you took your drs. advice to be treated, I think. At least you will know what it isn't down the road and have regrets. tongue does that make any sense? I think alot of us are surprised at how lousy we feel. And lupus is known as a great imitator, too. Both my neuro and my rheumy explained, when I objected to so much blood work every 6 months, that knowing what it isn't is helpful in deciding it is autoimmune somethings, since the antibody markers and symptoms come and go.  I'd like to come and go.... to a beach in Key West, ......... Disney World, .......... a massage spa on a cruise ship..........
hugs,
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.
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