In January of 05 I had a relapse. I wasn't nearly as sick as the first time, but my rash recurred and the symptoms did as well. My doctor said it couldn't be, there was no such thing as a rash recurring. I convinced him to give me another round of antibiotics, same dose and length of time was given to me. I felt better in a few weeks, but never got completely well. However, for about 2-4 weeks I thought it was actually completely gone. Then in mid April 05 it came back full force. I went to an infectious disease doctor, who said I had been undertreated both initially and with this recurrance. She said I never had gotten rid of it completely, and put me on 1000 mg of Amoxicillan 3 times a day for 90 days. I am currently in that course of treatment. I guess my questions are:

1. Do you think I will ever be rid of this? Has anyone else had a similar course of the illness, and gotten rid of it completely once they were finally on long term antibiotics?

2. At first, after a few days or week, I got really sick and felt like I had been hit by a truck. It didn't last long. Last week (into my 2nd month of antibiotics) I had two days that were about the worst I ever had. I could NOT get out of bed, could have slept 24 hours without a problem. I had zero energy and couldn't even drive my son to the gas station to get his bike tire filled. I have begun to feel better as of day 3, 4, and now 5, but still very tired. The primary symptoms I have had with this are: ringing in my ears, dizziness, feeling like I'm not really here-spacy, like I'm dreaming, sweating profusely at night, pain in the affected joints, low grade fever, completely brain fog to the extent I couldn't even read the newspaper. I have never felt so tired, thoroughly exhausted. Do you think these two episdoes were herxing? I hope so because I hate to think I was getting that sick again.

3. After I finished the first month of antibiotics, I didn't fill the second script for about 3 - 4 days, and I got really sick again. Can this happen, even after a whole month of treatment, just by stopping for a few days? If so, how do I know 3 months will be enough?

4. Does the joint pain ever go away? My left wrist continues to hurt and my PCP said it could now be lyme induced arthritis. I hope not, could it just be I haven't received the appropriate treatment up to this point?

5. I have bad lower back pain, but it feels deep into my back like it is right in the base of my spine. It's wierd because I've noticed the days I get this pain, are also the days I feel worse, tired, and especially brain foggy! Could there be any relation?

6. It seems like I can't fall asleep at night until really late, midnight to 2 am and then can't get up in the morning. Is this just that I am off schedule, or can this be part of the illness? IT's very strange and I've never had this before.

6. I have been feeling significantly more depressed since this mid April episode. Is that normal, is there anything I can do to feel better? I take 150 mg of Effexor XR and 30 mg of Adderall XR ( I could never get out of bed in the morning if it weren't for the Adderall, which is prescribed for Adult ADHD.)

I appreciate any information and feedback anyone has. I can't express how much it helped to read that others have things like ringing in the ears, etc. As many have said, I just feel like I'm crazy sometimes because these symptoms are so weird. My husband doesn't get how awful I feel, and why I sleep so much. Thanks for any and all info!
 

Usually babesia is not worth testing for, because they only can test for 2 strains and there are multiple strains. A lot of lyme doctors just go ahead and treat for it.

I am sure others will come along with more information. May God speed your recovery. Hiker
 

I have had lyme since 91 and have had many years of no symptoms and no treatment.

But I keep relapsing. They now think it is the underlying babesia infection.

If I were you, I would look into this right away.

Much luck to you and welcome to our board!
Trails
 

I also forgot to mention the Western Blot was positive for one band, Igm 23 kda. The Elisa was negative every time, and I never had a Western Blot until a couple of weeks ago.
 

On me if I miss a couple of doses-
in a row--I can feel it coming back
and loose ground each time--
Get meds ahead of time so you dont
run out--This is Important--

As far as the joint pain--Lyme attacks
your joints-- some people more than
others--also seams to effect places
that have been Injured before--more-

Glucosmine Sulfate has helped me
with joint pain--2000mg a day.
It rebuilds cartlage and helps
with tendons and muscles--
It has Really helped me
-It will help you too.

Magnsenum also works well--
It is hard to take with some
meds-doxi for one--
because it combindes with meds and
can make them not as effective--
so look into this--but take
magnsenum if you can--

Joint pain moved around on me--
I can not think of a joint it
has not effected--
-Most of my joint pain has gone
away now-- It was my Worst symptom--

Lyme can come and go alittle--
after awhile it can mostly stay--
So you have to do the Best you can.

Let me tell you from experance--
200mg of Doxi is like bringing
a knife to a gun fight--

The truck not only hit me -
it backed up and parked
on my body for many years-
-- But Now--
the truck is just chasing me
around the parking lot--
and it has a Full tank of Gas--

I have gotten better--You will too.

The sleep thing is common--
The sleep button dose not get
pushed--this can get better
as germ load is reduced--

The night sweats seam to be more
a Babs thing--If it is I have
that too-- This also comes and
goes on me too-

In Texas we call brain fog-
-- Hill Billy Brain--
-- kind of makes sence--

You will get Better--I Have-

I dont know how tell people
what We are going threw to--
--People who have only experanced
a few hours of pain in there lives.

I am sure most people Do not
have a Clue--and never will-
-Till a tick bits them...

Hope this has helped--Jay--

Next you must educate yourself, so you will know when you are getting good treatment.
www.ilads.org especially treatment guidelines-does it say 6 weeks is the minimum for a new case?
www.canlyme.com

Thanks again, and I appreciate any and all feedback!!!! Especially on the freaky symptoms like the brain fog, tremor (shaky hands especially), dizziness and loss of balance, ringing in the ears.. etc. Is there a separate treatment for co infections? It looks like they are hard to diagnose.

[This message has been edited by Jenifer (edited 05 July 2005).]
 

Forgive janet thomas. She is a one hit wonder that does not realize that you want to talk about your serious illness. Instead it is just "Educate yourself go to ilads.com." There is so much to learn and everyone is so different. I wish you the best of luck.
 

Many of the co-infections are oportunistic and only become a problem when you are very sick with a bad infection like lyme.

One of my co-infections was not diagnosed for a year after my lyme treatment started. Now I have a chronic infection and I'm still symptomatic a year later.

Proper diagnosis is key. If your current doctor won't test get a 2nd opinion before it is too late.

Good luck.

1) babesia infection or other coinfections that were never treated. and this IS the newest thinking on relapsing lyme. Also the top symptoms you describe are all babesia symptoms.

2) you were re-infected.

OR-like me, BOTH at the same time! The re-infection has brought the otherwise suppressed lyme back out from hiding.

Keep reading and posting!

Have you tried Lyme disease Association or foundations? They both have websites and they both can provide names of LLMDs.

Thinkin of ya,
Trails
 

quote:

---

Originally posted by Tracy9:
I asked my doctor about co infections, she said that is only an issue in the beginning. She said I have had Lyme for too long to have any co infections.

I also forgot to mention the Western Blot was positive for one band, Igm 23 kda.

---

Your doctor is VERY misinformed about coinfections. Neither statement is true.

I agree that your symptoms sound VERY much like babesia. Get treated ASAP. I also agree that you need to see an LLMD if you want to get well....and I'm sure you do!!

Band 23 is a classic hallmark borreliosis antibody That band alone means that you have lyme. [Don't expect your dr to agree with that since she's obviously not well-versed in Lyme issues.]

As someone said, the babesia often does not show up on tests. So just GET TREATED for it!

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

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oops!
Lymetutu
 

You WILL get better, but be mentally prepared for it to take a long time.

BTW, it sounds like you have Babesia to me. If you don't treat that aggressively in the beginning, you'll have trouble clearing the Lyme. Many people, like me, didn't test positive at first. We had to reduce our germ load before we began to create antibodies against Babs.

Good luck, and don't get depressed. With patience, you'll beat it.

KrisKraft
 

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