Should I really be spending all of this money?

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Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/20/2009 11:13 AM (GMT -6)   
I made a list last night of places I traveled to prior to my symptoms. I've never been to the east coast, never been hiking or camping, didn't really go into the woods much and only have visited Canada (Windsor), Mexico (Cancun), Ohio, Kentucky, Tennessee, Georgia, Florida, Chicago and Washington D.C.
 
I sat for hours trying to remember if anything bit me or if I ever had a weird rash and I just come up empty...
 
And I'm about to spend money on a PICC for IV Therapy...well, rather, my MOTHER is about to spend a lot of money she doesn't really have.
 
I feel in my gut I don't have lyme...I don't know how to explain that feeling or if it's just because of everything I just mentioned. I think it is just MS, but sometimes I think well my friends with MS don't have this or that...and then I start to believe it's lyme, but there are symptoms I have that not many people talk about here too!
 
I'm so lost...I just want to feel better...I watched the Under Our Skin documentary the other day and the park ranger w/lyme says "And then there's the phase where I get my life back...and that's the phase I'm in now..." (or something like that)
 
It just makes me want to cry. I'm worried I'll never get to that phase.


Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/20/2009 1:43 PM (GMT -6)   

Hi Jendays247.  Ticks are not only in the woods.  I got bitten walking into a business.  Many, many people are bitten without knowing it because ticks are tiny, they inject a numbing agent so you cannot feel them on you, and they often go in hard-to-see places.  Only about 50% of people who have Lyme ever get a rash.  I never did.

Have you had recent testing done ?  Have you been tested for co-infections?  These can be clues.  What are your main symptoms?  If your doctor is knowledgeable and experienced, then I would trust him/her.

It can be tough going through treatment and it can take time, but with proper treatment you can get better.  Never lose sight of that. 


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/20/2009 1:57 PM (GMT -6)   
I had testing done in 2006 and 2007. Both had positive bands but not enough to be diagnosed by Igenex or CDC standards. If I had a positive instead of IND on some, I would have definitely had a positive test result!

I've been tested (negative) for Babesiosis with the FISH test.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/20/2009 2:08 PM (GMT -6)   
Jendays, I certainly hope and pray that you find your answers! Do you feel certain that, even if you have lyme, you need PICC for IV Therapy?

I am convinced I have Lyme, but have also made up my mind I'm not going to take a PICC. If I ever get sick enough to need the hospital, then I would consider it, but not now. I have no money either. When I see the LLMD, I am going to request the Low Dose Naltrexone -- it is supposed to be inexpensive. And if the Dr, for some good reason, won't try it, I will start w/ oral abx and get strong on the natural stuff I can do myself. If I do take abx, I will convince myself that I WILL respond and WILL get better!

If you believe you might have MS, but still suspect Lyme, maybe you should consider something like the LDN which helps both?

Also, since you had IND on enough bands on WB to concern you, maybe you should be tested again? AS they tell us here, you may never receive proof from a lab test, but in your case, I think it would be worthwhile to try again, if the Dr will do it.
 
Do you remember what bands were positive before?

I feel just as you do, that you need to continue seeking the truth. And if the PICC is too expensive and drastic for you right now, then maybe you should hold off on it until you feel more certain that you need it.


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/20/2009 2:16 PM (GMT -6)   
I've been on LDN since 2006. I don't know if it's helping, and I'm not willing to find out by going off of it.

My 2006 Igenex test results are:

IGG:
39 IND
41 +++
58+

IGM:
30 +
39 IND
41 IND

Test results for 2007 were a little less reactive. Not surprising, I suppose.

Also, my LLMD says I need the PICC because my sx are primarily neurological, and this is the best way to go about treating them.


Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/20/2009 2:46 PM (GMT -6)   
JD, the IND 39 bands are definitely significant -- 39 is the most species specific band of all. So they definitely were not negative. I would think those need to be looked at more closely. A triple positive 41 IGG is also very significant for spirochetal bacteria, and someone on here said that updates show 58 to be significant.

If you really feel in your gut that you don't have Lyme, maybe there is another type of test your Dr would consider (CD57? something like that? I can't remember the others.... )
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/20/2009 8:04 PM (GMT -6)   

Hi Jendays247.  No test for Lyme is completely reliable.  The CDC requires a large number of bands to be positive for the test to be positive.  Many people who have Lyme are not CDC positive.  Lyme doctors typically look at which bands are present--some are specific for Lyme.  Band 41 is often the first to show and band 39 is a Lyme specific band. 

You said the test was done three years ago.   Was your Babesiosis test done then too?  Your results could be very different by now.   I recommend getting testing done.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/21/2009 12:55 AM (GMT -6)   
Jen,

Your WB results are very similiar to mine. I had IND's on 39 too and other Lyme specific bands. I had a +++ on 41 also and a + on 58. I know exactly how you feel about doubting if you have Lyme. I've been up and down with that question.

Did your doctor ever test you for MS to rule it out? Maybe you can do that while you are on treatment for Lyme.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/21/2009 1:52 AM (GMT -6)   
Jen is very sick. if it is lyme she would nd PICC . Remember all the other avenues of transmission, sexually,mosquito,biting fly,blood transfusion,other. just a thought. Go ahead see if it works, if it works then you could prob get a job and pay your mom back
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/21/2009 10:22 AM (GMT -6)   
CG~

I haven't had an MRI in a couple of years, but the three I had before that had lesions on them and every neurologist I saw said it wasn't MS. One said that if it was indeed MS, it would manifest in a way that would be undeniable. That scared me, but whatever.

I think I'm afraid to see a neuro and get examined as well as get another MRI because a part of me feels they will now tell me it IS MS.

(The reports have gone from saying the lesions could be demyelination to saying they are from injury or infection.)
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/21/2009 10:33 AM (GMT -6)   
Jen,

I'm sorry, I remember you saying that now. My brain has been all over the place lately. It would be interesting to see if those lessions go away or get smaller with treatment.

Do you feel you really need a picc line or can you handle the orals for now? I think it's your decision either way.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/21/2009 10:45 AM (GMT -6)   
If I do have lyme, I need to get this crap out of my brain. If my doctor says a PICC is the best way to do that, then it's really not a decision for me. I just have to.

It's sort of do or die right now. I can't afford to backslide at all.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/21/2009 12:15 PM (GMT -6)   
Jen,

Make up your mind, LOL. You asked our advice and I gave you mine. You weren't sure so some of us suggested that maybe you could wait. It is your decision. You're the only one that knows your body and how sick you are.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 6/21/2009 12:23 PM (GMT -6)   
Hi Jen,
I feel your pain and just wanted to say, you are LUCKY to have a mom willing to stand behind you and pay for treatment, if you do have Lyme Disease and you do get better you will be very  happy to do the PICC line, what are you losing by getting the PICC line? You are lucky  you know enought about Lyme Disease and you have a doctor and mom willing to work for you, GO  FOR IT AND GET BETTER, no harm done if its not Lyme Disease, I did get better on IV Rocepin and highly recommend it

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/21/2009 1:18 PM (GMT -6)   
CG-

I was just answering what you asked about orals vs. a picc. That's all.

I'm either going in with both feet or not at all, so if I decide to get treatment and my doctor says a picc is best, that is what I will do.

Judy-

Thanks. Did you have any bad herxes on iv Rocephin? Did you have it via picc?


Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 6/21/2009 1:21 PM (GMT -6)   
I did Rocephin, Minocycline and Zithro all together, herx on Rocephin was not as bad as on Mino alone, are you on any meds yet?Dont let the herx scare you, just be aware if you feel a bit worse you are not getting worse, the PICC was not bad at all,

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/21/2009 1:30 PM (GMT -6)   
I'm on Biaxin, and doing Flagyl 1 wk/month. I'm almost two weeks in.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/21/2009 4:40 PM (GMT -6)   
Jen,

It seems to me to be the wise choice. It's not that bad to have put in, and you kind of get used to it being there. I was on the Biaxin for 3 weeks and then the doxy for 5 weeks and my symptoms didn't go away until on the IV ceftriaxone. They moved around and changed, but wouldn't go away. In the first week I did herx, but I also was expecting it, so was prepared. The detox bath is a help for that. Now, I am back on the doxy because of the new tick bite, and am taking benadryl for the hives that I seem to be getting this time. I am really ready to be done with all these abx, but I did improve and want to stay that way.

We got out to Cabella's today, really dumb day to go there being weekend and Father's Day, but got stuff for my dog and myself and anyone who stands still long enough to be sprayed. It's supposed to work really well. We shall see!

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 6/21/2009 5:48 PM (GMT -6)   
In answer to ur original question, "Yes. You are worth EVERY cent"
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- I begin to fall apart, 08/01-LD +, 10/01- Igenex and CDC LD positive, 10/02-LD +, 11/03-LD +, 10/07-Bartonella +, CD57=3, koseri IgA +, Morganella +, motgani +,Rocky Mountain Spotted Fever +, Typhus +, Klebsiella pneumonia +, Proteus miabilis +, Citrobacter i IgA +, Hafnia alvai IgA +, NKC4 +, Interleukin 4 (IL4) +, IL8, Immunobillin (IM01) +. 
Rx's 06/15/09: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Lyrica 600, Levaquin 500, Diflucan, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs

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