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Should I really be spending all of this money?

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Lyme Disease
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Posted 6/20/2009 10:13 AM (GMT -7)
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.

Posted 6/20/2009 12:43 PM (GMT -7)

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. 

Posted 6/20/2009 12:57 PM (GMT -7)
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.
Posted 6/20/2009 1:08 PM (GMT -7)
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.

Posted 6/20/2009 1:16 PM (GMT -7)
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.

Posted 6/20/2009 1:46 PM (GMT -7)
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.... )
Posted 6/20/2009 7:04 PM (GMT -7)

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.

Posted 6/20/2009 11:55 PM (GMT -7)
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.
Posted 6/21/2009 12:52 AM (GMT -7)
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
Posted 6/21/2009 9:22 AM (GMT -7)
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.)
Posted 6/21/2009 9:33 AM (GMT -7)
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.
Posted 6/21/2009 9:45 AM (GMT -7)
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.
Posted 6/21/2009 11:15 AM (GMT -7)
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.
Posted 6/21/2009 11:23 AM (GMT -7)
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

Posted 6/21/2009 12:18 PM (GMT -7)
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?

Posted 6/21/2009 12:21 PM (GMT -7)
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,
Posted 6/21/2009 12:30 PM (GMT -7)
I'm on Biaxin, and doing Flagyl 1 wk/month. I'm almost two weeks in.
Posted 6/21/2009 3:40 PM (GMT -7)
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!
Posted 6/21/2009 4:48 PM (GMT -7)
In answer to ur original question, "Yes. You are worth EVERY cent"
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