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!!
Posted by sixgoofykids (Member # 11141) on :
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.
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. -
Posted by kimmie (Member # 25547) on :
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.
Posted by BoxerMom (Member # 25251) on :
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.
Good luck! BoxerMom
Posted by IckyTicky (Member # 21466) on :
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!
Posted by Keebler (Member # 12673) on :
- If you go onto IV Rocephin you will need a Rx to help protect your gallbladder. Something like urusol. -
Posted by Pocono Lyme (Member # 5939) on :
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.
Posted by LightAtTheEnd (Member # 24065) on :
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.
Posted by KGS104 (Member # 22601) on :
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!!
Posted by BackinStOlaf (Member # 23725) on :
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.
Posted by maryland (Member # 10345) on :
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!!
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by maryland (Member # 10345) on :
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:)
Posted by Keebler (Member # 12673) on :
- Please refer back to the informational links posted here for you by SixGoofyKids, BettyG and AliG: -----------