A little over 2 years ago- had a tick and EM rash, took some amox. got a little better. Three months later was sick again, saw some doctors they said it isn't lyme, it's rhuematalogical (even though i was having the same symptoms as when i had lyme)
Went to another doc, began various treatments. Have a friend with long term lyme who did IV rocephin and got better. I got another doc who is sympathetic to help me out in getting the Rocephin (free). So after various combos, I am now taking metronidazole and rocephin. (IM)
I dont really know where to go with this treatment- so I went to my friends doc (the one who got better on rocephin) today. He answered my questions- but created more questions.
I'd really like some peoples help/opinions regarding this info.
He says I probably don't have lyme.
I probably did have lyme but the abx has taken care of it.
Either the lyme or the Abx have caused me to develop Lupus.
he said to stop taking the metronidazole.
He said stop taking Rocephin after the third week of treatment.
He said after a week I should go to a rhuematologist where they'll run some tests- sed rate, other stuff...
The question I went in there for was to find out how long I should take the rocephin after my symptoms go away. I seem to be improving with the rocephin.
if i stop taking the rocephin for a week will that make it less effective if i have to go back to it??
I have had positive and negative lyme tests (but luckily i had the rash and saw the tick)
I have a positive ANA, high sed rate at last testing...
I have more lyme symptoms than Lupus
I just don't know what to do
but i only have two of the lupus symptoms- pain and fatigue, no fever, no weird sun rashes, no ulcers in mouth or nose- none of it
But i do have an increase in my symptoms right before i start bleeding monthly- which is consistant with lupus- but i've heard lyme people say that too.
My real question is what to do about this rocephin. do i stop after 21 days? After i'm symptom free how long do i continue if I do continue.... what if i do have lupus and i'm poisoning myself with abx?
what if the abx are really causing lupus. what if the lyme is causing lupus
what if i have lyme and lupus?
As you know, an EM rash is diagnostic for Lyme.
If adequate treatment is NOT given (strong enough & long enough) then the bacteria goes into hiding & will flare up later.
Do you know how much Amoxicillin you took per day & how long you took it after the EM rash? (Your pharmacist may have the info if you don't.)
Those details would give a pretty good idea of whether you still have Lyme.
Typical treatment just isn't enough.
If you're improving on the Rocephin, then that's an indication that the treatment is correct.
I'm no dr, but it seems to me that the facts seem to indicate you still have Lyme.
* Had a tick bite.
* Had EM rash.
* Took Amox & "got a little better."
* 3 mo later - sick again.
* Improved on Rocephin shots.
* Had positive & negative Lyme tests.
* Diagnosed: rheumatalogical, Lupus (typical)
* More Lyme symptoms than Lupus
My recommendation is that you be evaluated by a Lyme Literate Med Dr (LLMD) - ASAP.
I don't know your symptoms, but in addition to Lyme, you could also have one or more co-infections like Babesiosis, Ehrlichiosis, Bartonella. Symptoms are similar to Lyme but they take different meds.
Where are you located?
Go to Seeking a Dr here on LymeNet & put your location in the title. Drs names are not given without their permission, but info will be e-mailed to you.
On the left, check Support Groups in your state & adjoining states. They should have very helpful info about LLMDs, or the lack of LLMDs in your area.
How was your friend diagnosed? (EM rash, testing, symptoms, etc)
How much treatment did friend get?
How is your friend feeling now?
Was (s)he checked for Co-Infections?
From what your friend's dr said to you -
I was thinking, you & your friend may both need to see an LLMD.
Print "Diag Hints & Treat Guidelines..." www.ilads.org/burrascano_1102.htm
32 pages of excellent info.
Print "ILADS Lyme Treatment Guidelines Summary" - 4 or 5 pages of facts everyone should read. (not Dr B's guidelines above) www.ilads.org/guidelines_summary.htm
Note #10 begins "There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease.."
Keep in touch & the LymeNet group will help you as much as possible.
[This message has been edited by cbb (edited 18 August 2004).]
Can't seem to get one link correct. Hope it works now.
[This message has been edited by cbb (edited 18 August 2004).]
my friend had lyme 6 years, had a picc line- did rocephin for 3 weeks- says shes still feeling good.
this doc said not to do more than three weeks rocephin- but everyone seems to do more than three weeks rocephin.
i've been tested for coinfections- negative
i think she had one of the B ones (bartonella or babesia) that cleared up before the lyme did.
will it hurt me to go off rocephin for a week to have a sed rate test? is it worth it? will it tell me anything?
Here are 2 posts I think you'll find very interesting about the ANA.
http://flash.lymenet.org/ubb/Forum1/HTML/026719.html
http://flash.lymenet.org/ubb/Forum1/HTML/025887.html
My rheumatologist yelled at my husband & that DOC was never so glad as to never see us again. (My labs were pretty weird & he couldn't make heads nor tail out of them.)
Here's my amateur opinion, but just remember everything is your decision. I'm just voting here.
If it were me, & I had seen the rash/tick----I would definitely take all the Rocephin until it runs out with Flagyl, probiotics, Actigall (protect gallbladder.)
You have lyme & you need treatment. I've done the Rocephin inj. so I know you will need a couple of oral ABX immediately after stopping the Rocephin.
Or perhaps, treat for Babesia & other co-infections.
Unless you can stay on the Rocephin for a very, very long time-----it's likely you'll relapse. You will, however, have lessened your bacterial load & Rocephin does go to the brain.
I think your Rhumat. is looking at you like a lab test. He needs to be a biologist & look at the patient. He needs to see the science behind those tests relative to the patient's symptoms.
Sed rate can be elevated in hundreds of diseases. Lyme causes inflammation (vasculitis; neuritis------that's our big problems).
My LLMD said the arteries of a Lyme patient are lined with white blood cells/inflammation trying to fight the infection.
The ANA is explained in those posts.
Sorry, I'm writing in a hurry------going to Houston to LLMD tomorrow. I'll check post when I return & see what you decided.
There are so many knowledgeable folks on this board who can help you better than I can.
I want you to make the right decision for you & not get side-tracked.
Take Care,
Jan
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
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No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH
Marnies......... Ten Points Regarding Mg and Lyme Disease Magnesium Updated in a Nutshell
Help with Meds
And welcome to lymenet.
I think it is key that your are improving on rocephin (abx). It could be safe to assume you have a bacterial infection.
Whether you continue with IV or switch to orals IT IS important to continue abx until you have been symptom free for a period of time, typically 1-3 months, your llmd will tell you how long.
Your experiience with yes, no, maybe is typical. So little was/is REALLY known about TBI and treatment. It is truly best and most time and $$ efficient in the long run to get a llmd as soon as you can to evaluate you.
It is a + that you are on abx already and that you have found lymenet.
Mel