posted
so i have been fighting lyme for the past 8 years. My symptoms include pain in the joints and deep down, possibly my bones?
swelling mainly in my fingers and knee's, a foggy head, severe mood swings, severe fatigue,
very painful ear aches for about a year straight with no cause, forgetfulness, lack of concentration, memory problems, twitches thru my whole body,
stabbing pains in different parts of my body, anxsity and panic attacks. i never had any of these things and they have all come on at some point in the last 8 years,
which I odviously accredit to the lyme. I have seen countless doctors who have told me there is nothing wrong.
I was finally able to see an infectious disease specialist, i live in CT by the way, so i thought this would be a good place to find a doctor.
He put me through countless tests in the past 8 months basiclly trying to prove that i didn't have lyme. He found nothing.
Now 8 years ago my western blot test came back with 6 bands positive and i was treated with doxy.
since then i have been on doxy, becuase it keeps my symptoms under control while im on it, about 3-4 times a year.
I still test positive for thoes same bands. my Infectious Disease Doctor finally agreed to put me on IV antibiotics which was what i was hoping for.
Its only for 28 days though so i am a little nervous that its not going to work. I was hoping to get a little insite on what everyone else thinks about this,
to me 28 days seems to short a time span and i have a feeling he wont do anymore if i dosn't work.
But from what i have read my lyme doesn't seem to be nearly as bad as others, my spinal fluid does not have any bacteria in it which is great but if these antibotics don't work can it progress?
Any information would be fantastic, escpecially on whether or not if this doesn't work whether i will get worse or not, im not sure i can handle trying to find another doctor. Thanks!!
Posts: 5 | From CT | Registered: Sep 2009
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would post in seeking a doctor to find a Lyme literate physician (LLMD) near you. An infectious disease doctor most likely won't treat you long enough for chronic Lyme as they don't believe in it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You need a LLMD.
Spinal fluid does not not usually SHOW spirochetes even in those very ill with lyme. It's a VERY poor test for lyme and really should never be used just to test for lyme but ID doctors do this anyway, usually to deny treatment. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
28 days of IV rocephin did help me, than I was asymptomatic for 2 weeks and relapsed. Overall I did make progress. If your insurance will cover it, go for it. But do know that you will need additional treatment following that. Doxy is 300-400mg/day for lyme. Sounds like you are not really killing Bb, just limiting its growth?
You will likely need more than one type of ABX to target the different forms of Bb. This is where you need the experience of an LLMD to help.
Posts: 747 | From Utah | Registered: Apr 2010
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
You CAN handle finding another doctor, I promise. Post here in Seeking A Doctor.
Do the 28 days of IV. That's a great start. But have an appointment with an LLMD lined up for when your 28 days are over. You will need further treatment.
Honestly, the hardest part is going doctor to doctor, with inaccurate diagnoses and inadequate treatment. You've done the hard part!
Once you get to a good LLMD, you just follow the program.
And, yes, you will get worse if you don't get adequate treatment. Sorry.
Get away from this ID doc! He is poorly informed and not treating with your best interests in mind.
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
You definitely need to find an LLMD. Take the 28 days that the ID doc will give you and in the meantime start searching for that LLMD!
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you go onto IV Rocephin you will need a Rx to help protect your gallbladder. Something like urusol. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Like others have said, you need a LLMD.
Very often, well most often, lyme patients have other tickborne infections also.
Those infections need different treatment that an infectious disease doc will not even be aware of or turn a blind eye.
Just like Boxermom stated, getting a LLMD to treat you will be easier in the long run and most importantly, Effective.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
posted
I echo everyone's recommendations that you run to an LLMD, who will diagnose and treat you properly.
You should take probiotics whenever you are on antibiotics, to prevent systemic yeast infections.
I have heard of people taking prescription actigall to protect their gallbladder while on IV Rocephin, because even a few weeks can damage it otherwise.
Good luck, and I hope it helps you make progress toward recovery.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
| IP: Logged |
posted
hi everyone thank you for the responses i just finished my 28 days of rocephin and other than being tired i feel fantastic.
I asked my doctor to keep the picc line in until he was positive that the lyme was gone. of course he laughed it off and told me he was positive that it was.
I am not so sure. I am really worried that i am going to relapse. I am getting more blood work done on the 9th but,
my visiting nurse told me that even if you are lyme free you can still test positive. Has this ever happened to anyone?
i don't know why it would and i would love some answers. Thanks!!
Posts: 5 | From CT | Registered: Sep 2009
| IP: Logged |
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Antibodies to Lyme will always be in your body even if you 'cure' it. So testing to see if you are cured is pointless.
The only accepted test is the CD-57 test. If your number is very low, chances are you will relapse.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
| IP: Logged |
quote:Originally posted by KGS104: so i have been fighting lyme for the past 8 years. My symptoms include pain in the joints and deep down, possibly my bones?
swelling mainly in my fingers and knee's, a foggy head, severe mood swings, severe fatigue,
very painful ear aches for about a year straight with no cause, forgetfulness, lack of concentration, memory problems, twitches thru my whole body,
stabbing pains in different parts of my body, anxsity and panic attacks. i never had any of these things and they have all come on at some point in the last 8 years,
which I odviously accredit to the lyme. I have seen countless doctors who have told me there is nothing wrong.
I was finally able to see an infectious disease specialist, i live in CT by the way, so i thought this would be a good place to find a doctor.
He put me through countless tests in the past 8 months basiclly trying to prove that i didn't have lyme. He found nothing.
Now 8 years ago my western blot test came back with 6 bands positive and i was treated with doxy.
since then i have been on doxy, becuase it keeps my symptoms under control while im on it, about 3-4 times a year.
I still test positive for thoes same bands. my Infectious Disease Doctor finally agreed to put me on IV antibiotics which was what i was hoping for.
Its only for 28 days though so i am a little nervous that its not going to work. I was hoping to get a little insite on what everyone else thinks about this,
to me 28 days seems to short a time span and i have a feeling he wont do anymore if i dosn't work.
But from what i have read my lyme doesn't seem to be nearly as bad as others, my spinal fluid does not have any bacteria in it which is great but if these antibotics don't work can it progress?
Any information would be fantastic, escpecially on whether or not if this doesn't work whether i will get worse or not, im not sure i can handle trying to find another doctor. Thanks!!
-------------------- Bullsye rash: 1994, tx w/ ABT, Symptomatic:1999 Hospitalization: 2004 Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since. Severity of symptoms continue to worsen intermittingly. Posts: 140 | From maryland | Registered: Oct 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You need to run, run, run, run to an ILADS-educated Lyme Literate MD.
Your "28-day IV treatment" may be helpful but you need to see a doctor who is more educated in this matter.
There is no cure for lyme. You can achieve a good strong and long-lasting remission, however. It's a roll of the dice as to if you've have enough treatment.
I want this to work for you, and for some it has by some miracle. But, for many, relapse follows too short of a treatment. Lyme should be treated for several months - and at least 2-3 months beyond all symptoms.
You also need to be assessed for other tick-borne infections.
And, a cyst buster may need to be employed. Rocephin does not treat all the forms of lyme.
You say you are getting more blood work done on the 9th?
WHY? If for lyme, it's a waste of time and money. You don't need more lyme tests. There is no test that can show lyme is gone.
Please see a LLMD or LL ND (naturopathic) doctor for follow-up. One who is clearly ILADS-educated. Your current doctor is not.
Sorry. Good luck. If you can jump right on this with an experienced LLMD, you still stand an excellent chance for a good remission. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
It's too bad that ID docs are determined to work hard to prove to patients that they do not have Lyme, and when patients so (like yourself), they are too conservative with prescribing ABT. I think that 28 days is too short of a time especially for chronic Lyme.
I have personally learned that various testing does not always assure any positive test results. for example, I recently underwent gallbladder surgery and made arrangements for the doc to biopsy my gallbladder and still negative results- BUT my symptoms always respond to courses of ABT. FYI: I have had all of your symptoms and a lot of GI issues too
hope that helps:)
-------------------- Bullsye rash: 1994, tx w/ ABT, Symptomatic:1999 Hospitalization: 2004 Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since. Severity of symptoms continue to worsen intermittingly. Posts: 140 | From maryland | Registered: Oct 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please refer back to the informational links posted here for you by SixGoofyKids, BettyG and AliG: -----------
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic