Depressed and Confused

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/9/2010 9:21 AM (GMT -7)   
cry  I feel so down...I hate the way I feel most days.  I feel like I'm doomed to be sick forever. 
 
I was diagnosed last year with Lyme...I have beent taking antibiotics on and off for a year.  Still not better.
 
My first lyme test revealed.
 
IgM positive: band 41 and band 39
 
A couple of months ago I tested positive again for
 
IgM positive:  band 41 and band 39 - no positive IgG bands
 
Since I have been continuing to have neuro symptoms my Neurologist had me get a Lumbar Puncture done three weeks ago.  Well the results are in:
 
No positive IgM bands - which does not make sense - a few week prior I tested positive on band 41 and 39 from blood work.
 
The only positive IgG bands were: band 39 and band 58, which does not yeild a positive result since it was only two bands. 
 
Per Neuro doc my lumbar puncture was completely normal.  Now I feel lost wondering what is wrong with me.  Why do I feel sick and have all these neuro symptoms. 
 
Have I been going down the wrong path, treating lyme...maybe something else is wrong.  I feel so depressed. 
 
Thanks for listening. 
 
 

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 7/9/2010 9:49 AM (GMT -7)   
The tests aren't very accurate, so it doesn't surprise me that you'd get conflicting results.

Maybe it would help if we knew what type of treatment you have been on? What are your symptoms? Be sure to keep track off all of your symptoms, even the ones that seem insignificant. Have you been tested for co-infections? Lyme is harder to treat if you have another infection along with it.

We can't diagnose you, but we can share are own experiences, which may help you get onto the right treatment path.

3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/9/2010 10:00 AM (GMT -7)   
Symptoms I have experienced are:

fatigue
twitching
Spasms
left shoulder joint pain
left knee joint pain
fatigued muscles
muscle pain
eye twitching
headaches
GI issues
Difficulty swallowing
feel pain
Insulin Resistant
numbness
agitation
tingling on my tongue
nose spasms
Chest pain
chest palpitations (occassionally)
Feeling like something popped in my head
Ear pain...sometimes hearing fades and comes back
jaw pain
Weakness
Neuropathy - pins and needles in hands and feet
At times feels like something is running down my arm
Sciatic nerve pain on left side

So many other symptoms occur on and off...I was keeping a log last year, but I feel so exhausted that I just did not keep up with it.

I have only taken Doxcy 100 mg (2x a day) on and off for a year.
Vitamin C
Vitamin D

I have not been tested for coinfenctions...doc I had said they don't normally come back positive. Did not want to waste my money.

I'm not looking for a diagnosis...just wanting to vent. I feel so depressed:(

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 7/9/2010 10:19 AM (GMT -7)   
From what I can see, all of your symptoms could be caused by Lyme. Some of them could also be caused by co-infections, but nothing jumps out at me. Your depression can also be caused by Lyme. It's hard to tell if we're depressed because we're sick for so long or if the illness itself is causing the depression.

Have you had any improvement at all with the treatment? It might be time to chance something. It also might be helpful to explore things that might be holding back your recovery. Here's an example from my own experience. After a couple of years of treatment, my doctor noticed that my hands and feet were ice cold. He said that it was probably because of the swelling that Lyme causes. The swelling decreased my circulation, which caused the coldness. The decreased circulation made it harder for the antibiotics and the immune system to reach my whole body. It also made it harder to remove the toxins from my body, which made the herxes last longer. He had me try Boluoke, which quickly fixed that particular problem. I started feeling better right away. I also started exercising regular (riding a stationary bike), which also helped my circulation.

Your doctor is correct that the tests are frequently inaccurate, but sometimes they show something that the doctor missed. I tested positive for Babesia, which none of my previous doctors before my LLMD even considered. My Lyme and Bartonella tests always come back negative, but I have a clinical diagnosis of both.

Feel free to vent all you want, but hopefully we can provide some useful feedback so that you don't have to keep feeling this way.

3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/9/2010 10:47 AM (GMT -7)   
Thanks for listening...I have an appt the end of August to see a llmd...I'm interested is hearing the docs opinion.

The new doc may want me to get tested for coinfections...not sure.

I do appreciate the feedback.

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 7/9/2010 11:04 AM (GMT -7)   
Good luck with your LLMD appointment in August. I hope there is some way you can feel at least a little better before then. Let us know if there is any way we can help, even if it's just to listen.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 7/9/2010 1:04 PM (GMT -7)   
I so hope you like your llmd.  I went 4 years undiagnosed, went to an llmd and hated him.  Since he was very expensive (and arrogant) I did not go back but went to an infectious disease dr.  Had I not had lyme that long, I think I would have been ok with him as he was very interested in helping but I firmly believe he just does not know lyme.  After I hit a roadblock with treatment and was getting worse fast, I called and luckily got in to see another llmd about an hour away.  In two months time, she has me feeling better than the past 5 years.  I know I have a long way to go but she says we have alot of different options and ways to go.  When those on this board say get to an LLMD with this disease, it is really imperative.  My infectious disease and neurologist literally shrugged their shoulders about what to do when the insurance company refused me IV rocefin (which they continue to do). But now I know there is other help out there.  Very very important to get tested for co-infections.  You will not get better unless you are treated properly and separately for those.  Best of luck to you.

3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/9/2010 2:16 PM (GMT -7)   
Thanks...I just don't want to waste anymore of my money or time treating for an illness that I could possible not have. The fact that my LP was negative definitely makes me question the diagnosis of Lyme. I'm not sure why I was told I have it last year...I feel so frustrated trying to get my mind wrapped around this whole thing.

I hate thinking this way, but I will need to die in order for someone to figure out what is wrong with me.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 7/9/2010 2:45 PM (GMT -7)   
OK from what I understand band 39 by itself is a lyme diagnosis. all of your symptoms point to that also. I have never tested positive for lyme (other than through Igenex which was still CDC negative) but have tested positive for two co-infections. Band 39 was one of my only bands also. DO NOT LISTEN TO WHOEVER IS TELLING YOU DO NOT HAVE LYME. I did and it cost me four years of my life and a rougher tougher battle. Do the research, band 39 is lyme specific. Some of our symptoms are eerily similar. Jaw pain, anxiety, neck and shoulder, pins and needles, facial pain, etc. etc. etc.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4303
   Posted 7/9/2010 4:35 PM (GMT -7)   
Hi 3whiteroses,
 
The way I see it, lyme is really a clinical diagnosis based on one's symptoms.  I knew I had lyme before I tested positive based on my symptoms.  I went from being a very healthy lady to one sick puppy (I had a very stressful situation which I think compromised my immune system) and nothing made any sense.   For 5 long "depressing and frustrating" years I went from doctor to doctor as I got sicker and sicker and they all told me I didn't have lyme.   I was told I had chronic fatigue syndrome, or I was depressed, or it was all in my head, and the list goes on..  I think most people here can relate.    I was so desperate for a diagnosis that I would have taken cancer at that point, no kidding.
 
I became so disgusted with all the doctors I saw that I decided to do my own research and knew I had lyme, test or no test.   Sure, I was thrilled when I finally tested positive but only to confirm what I already knew.
 
All I can say to you and everyone else who is reading this is if your current protocol is not helping you, it's time to look at the other protocols out there.   Antibiotics didn't do anything for me except make me sick to my stomach.   I wasn't on them for a very long time but long enough to know they were not helping me.  Looking back I was praying that they were helping and kept saying to myself "I'm getting better!"  Ha, I was only fooling myself because I wanted to be better in the worse way as everyone here does.  
 
After the antibiotics my doctor refused to prescribe anymore for fear they would do damage to me so I felt really scared because at that time I thought that was the only answer to getting better but he did me the biggest favor in the world! 
 
I had tried some alternative medicine (silver, samento) but it didn't help..  I also didn't know about detoxing back then and how important that was and still is.
 
Yes, I felt really depressed and very lost..   Then someone on another forum mentioned Dr. Jernigan's book and was really impressed by what Dr. J. had to say.   I was still skeptical about trying his protocol until another person went to his clinic and her husband posted about his wife's recovery after her suffering for 30 years.  That's when I said to myself "open your mind Denise and buy the book, what do I have to lose?"
 
The rest is history, I got better using Dr. J's "healing at home" protocol and learned so much about this disease, detoxing, etc. 
 
Thus I feel your frustration as well as depression.. I walked that road and it was the most horrible road I ever walked..   
 
Hang in there, you will and can get better,
Denise
 
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/9/2010 6:59 PM (GMT -7)   
White Roses,

Band 39 is Lyme species specific and indicates that there are lyme specific anitbodies in your blood. I'm not sure why this would show in your IgM and not your IgG, still, there was a positive reaction on band 39.

I do not know anything about the lumbar test.

I do not claim to be able to diagnose Lyme, however, can point out what your test seems to indicate. I can also point out that there are many many reasons for false negative tests. And one possible reason is having been on and off antibiotics for a length of time.

Having a positive band 39, along w/ your symptoms, is definitely worth pursuing. Do you think you could get your Dr to order a CD57?

And btw, a high Babs count showed in my blood tests from a year ago. So, yeah, they can show up. They just don't always show.

I'm no Dr and certainly no insurance company, but seems to me a CD57 would be in order and could possibly give you more clues.


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 7/9/2010 7:26 PM (GMT -7)   
However, a CD57 can give false readings also if you have bartonella. Nothing is that easy with lyme.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 7/9/2010 7:28 PM (GMT -7)   
CSF lyme tests are seldom positive in Lyme patients. This might be due to immune complexes (Lyme bacteria stuck to antibodies, so the antibodies can't stick to the test material and thus are not detected by the test). You have a positive blood test, that plus your symptoms are enough for most LLMD's to diagnose & treat Lyme.

I noticed that your dose of Doxycycline is low (100mg 2x/day ~ usual LLMD dosing is 200mg or higher 2x/day) - perhaps that is why you haven't made much progress. It will be interesting to know what the new LLMD says. Keep us posted, and as always, you are welcome here anytime to vent, ask questions, and get the support you need through this challenging time.

Take care,
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, homeopathy.


3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/9/2010 7:40 PM (GMT -7)   
Thank you all for your feedback. I really needed to get that off my chest. As I drove home from work today all I could do was cry. I never imagined a year later I would still feel like crap. I had this vision that I would be better and I could be on my way to being myself once more. I hate waiting so long to see a llmd, but supposedly the one I will be seeing is one of the best.

The appt will be a bit expensive, but I have hopes of getting this into perspective...a plan...some light in my dark tunnel.

In the mean time I plan on calling Igenix and getting a WB done through that lab. One more opinion to hopefully shed some light on my situation. Besides I believe they test all bands unlike some labs.

I feel really guilty about spending the money...I feel like I'm taking away from my husband and kids. I just wish this was not so darn complicated.

I will keep everyone posted...I do lurk most days.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 7/10/2010 1:35 AM (GMT -7)   
3whiteroses,

Your being ill is taking more from your family than a few hundred bucks on some tests and a doctor appointment, and those tests and that doctor appointment may actually help you get better so you can participate more with your family. So I don't think this is money taken from them at all.

Just my view...take care,
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, homeopathy.


springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 7/10/2010 8:52 AM (GMT -7)   
I agree. For years, I felt so lousy and guilty about not being able to give 100 percent to my husband and kids. Now that I am seeing an LLMD I do not feel guilty about spending the money on seeing her or the supplements because I know I can give back so much more. It will be the best money ever spent. and you will see that once the dark cloud is lifted off your mind with proper treatment.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 7/10/2010 8:53 AM (GMT -7)   
btw I refused the spinal tap because i understand it to be about 5% accurate in detecting chronic lyme. So don't listen to the neuro or the spinal tap. Listen to your body.

3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/10/2010 2:52 PM (GMT -7)   
Thanks springsjean...I have heard from others that the spinal tap does not always show the Lyme. I can't help but wonder why they request that test. For one is was really painful...I had to do it without numbing medication due to allergies. I will never do it again unless it is a matter of life or death.

All I really know is whatever is wrong with me it is taking a toll on my body...my overall well being is not right.

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 7/10/2010 3:03 PM (GMT -7)   
Hi,

I have neurological lyme and severe neuropathy. My neurologist had me do the lumbar puncture to rule out MS, unfortunately my oligloclinal bands indicated possible MS. I already had several positive western blots prior to the spinal and my spinal fluid came back IgG positive. Another thing that they check for is spinal meningitis. My procedure was not painful, however it took me over a week to fully recover.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin, Ceftin.
 
 


3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/10/2010 3:14 PM (GMT -7)   
betterhealth - Atleast your test came back positive, and you could put your mind at ease knowing that you are infact infected with Lyme.

I have had two WB both only showing me as IgM positive...the doc tested the spinal fluid says I don't have lyme since my test was negative in the spinal fluid. Now I don't know what is wrong with me...I have spent a year thinking I was battling lyme and now I feel like I'm back at the start wondering why I'm so sick. Many of my symptoms are neurological, so getting a negative result just adds to my confusion.

I plan on getting one more test through Igenex...My last two WB were done through labcorp. If my results come back positive I will feel confident that I do have Lyme, if not, than I will be to start over and try to figure out why I feel so sick. I will abandon the idea that I have Lyme. There is no need for me to put medications in my body if I don't need to. I may need to wait it out...eventually whatever is making me feel so sick will reveal itself.

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 7/10/2010 4:29 PM (GMT -7)   
It is good that you are seeing a LLMD next month. I'm sure that your new doctor will be able to determine if you have lyme or not.
Good luck with your appointment and Igenex testing.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin, Ceftin.
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 11, 2017 2:52 AM (GMT -7)
There are a total of 2,903,886 posts in 318,695 threads.
View Active Threads


Who's Online
This forum has 158106 registered members. Please welcome our newest member, Pottybutt.
193 Guest(s), 3 Registered Member(s) are currently online.  Details
polkadotdress, OriolCarol, testuser1234