Antibiotics efficacy for Lyme

This poll is for those that experience many of the usual Lyme symptoms, but have no firm diagnosis. That is, you were diagnosed Negatively by an ID (e.g., due to negative bloodwork/ELISA,etc.), but were also diagnosed "probably have Lyme" by an LLMD.

How effective is the antibiotic treatment for mitigating your Lyme symptoms?

Please elaborate if my poll questionnaire is too simplistic. Thanks.

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72%

 (8) 

Great benefit (i.e., wish I started sooner!)

9%

 (1) 

Slight benefit (i.e., worth taking)

0%

 (0) 

No significant benefit (i.e., shouldn't bother)

0%

 (0) 

Side effects outweighed any benefit

18%

 (2) 

Have not taken antibiotics

11 Members voted

[PlateletGal]

I won't participate in the poll because I don't have lyme. But I was taking antibiotics for mycoplasma infection (CFS) and that has helped me a great deal.... still have more zapping to do though.  For some reason, antibiotic therapy in CFS patients is taking longer than sarcoidosis and autoimmune patients. We have multiple infections I guess.

[cindy903]

I didn't feel better right away. Turned a corner late into my second month.

I have a CDC positive test. I had a Lyme rash that was about the size of a silver dollar, an inch of clearing and then another weird red circle. Disgusting.

I am not IGg positive so would have disqualified for the famous research "disproving" doxy as a cure for chronic Lyme.  Until we can even prove chronic lyme exists from a researcher's perspective -- a test that indicates a persistent infection -- the use of antibiotic therapy will be the work of our "underground network" of doctors.

Biaxin helped me more than doxy I think. Am still on both. Good days and bad. I hate having this. It's the worst thing I've ever had and no conventional doctor will do anything for me except argue.

[jason80]

I'm confused by your comment when you say CDC positive, but IGg negative. To be CDC positive, one has to be IGg positive, correct?

[jason80]

bump. There must be more than 6 individuals with these symptoms, in this situation..

[JackieCalifornia]

Yes, there are more of us out here, but your question is unclear in its intention.  

Lyme and its coinfections are so variable in each individual and the treatment is so varied among doctors and their patients that making blanket statements about "antibiotics work" versus "antibiotics don't work" is meaningless simplification.

You ask only people with a 'firm diagnosis' of Lyme to respond.  Diagnosis is just the first unclear thing about Lyme ... and whether a diagnosis is 'firm' is sometimes questioned due to the confusion in medicine about Lyme etc.  

So what is it you are asking to find out specifically?  

[PlateletGal]

For those of you who are still waiting for an accurate diagnosis or who have symptoms of Chronic Lyme Disease, but your physician refuses to treat you.... there is an option that is available to you and one that has been working for me. I switched from an antibiotic protocol to Dr. Jernigan's natural formulas and I was surprised because I am having herxing symptoms on Jernigan's treatment.... even the yeast formula ! Check out the health pages or feel free to contact me if you would like more info. There are other MedHelp members who are doing Jernigan's formulas and I can also put you in contact with them. (with their permission first).

[kitty9309]

I have a clinical diagnosis. Bulls eye rash 14 years ago, followed by swollen, sore knees, followed by a vertigo attack that became a chronic dizzy/dysequalibrium.

All the doctors thru the years tested me for Lyme- all negative. I was not treated due to this. The rash was blown off.

Recent IgeneX WB only positive at band 41, so another negative test.

Started a low dose of minocycline and do believe I have had a moderate herx reaction.

I see the doctor again next month and am awaiting PCR tests on 4 different strains od Borrelia, including lonestari. I was bit in North Carolina, so lonestari is a good possibility and would be why my tests to burgdorferi are negative. PCR has a very low yeild, though, so I am not expecting much.

My CD57 is fairly low at 60.

I will update on my progress with the minocycline as time goes on.

I don't think this was the clear cut anser you desired, but not much is clear cut with the controversy with Lyme and coinfections.

~Kitty

[jason80]

The IDs gave you a negative dx, and the LLMD gave you a postive dx, correct? So even the bullseye rash and symptoms at the same time with a neg IGG leads the ID to a negative dx in your case.

I am starting to wonder whether  the main challenge is getting the IDs to believe the recollection correctly if it is ~ decade ago. It seems like the bulls eye rash makes a big impression on the IDs that I've seen, I think much more so than it should be. I always tell them that the tick was on my scalp so pretty tough to see a rash.  My blood work sounds similar to yours and my coinfections were all negative.

[kitty9309]

I never saw an ID. I have seen Neurologists, Oto-Neurologists, ENT's, PCP's.

Most doctors just don't listen. The first Oto-Neuro, who diagnosed me with Meneire's Disease, ordered an ELISA to "rule out Chronic Lyme". It is written in the copy of my chart I requested. They all suspected Lyme, but b/c tests were negative, said no. I started to tell the neuro about the rash, but he sarcastically said " And you are wondering if you have Chronic Lyme- highly unlikely!" He didn't listen to the fact that I was referred to him by the endo. He did call him after my visit (why not during) b/c I just kept saying "I can't believe the endo didn't call you like he said he would."  Later, I wondered if he thought I had already been treated for Lyme. He never asked me, though. The LLMD did. Something in my history prompted him to ask.

My endo is awesome. Not only does he work with me on my thyroid problem, he was the first to look at a history I had typed up. It begins with a bulls eye rash b/c theat is when i began to have symptoms. He sent me to the neuro and later apologized that the neuro treated me so badly. (Of course, he said I have a SEVERE anxiety disorder. Never mind that I had been on Lexapro for a year after having sever anxiety and insomnia when my thyroid went wacky last year.) He told me I was listing a symptom from nearly every body system (hello, isn't that the definition of late Lyme?) and that my shoulder pain that was excruciating, but brief, was due to anxiety!

I wish I had an invention that could go into my brain and take a picture of the rash I know I had after a CAMPING trip to North Carolina. I think I may have B. lonestari. I guess I already said that above.

I do have a blood smear with a low count of Bartonella. The doctor is going to likely add Zithromax in a few months. It is a smear from Fry and they are now calling the bug- Hemobartonella. There seems to be a controversy on this bug. My blood was also sent to a NC State vet lab- a Dr. Breitschweidt (sp?) runs the vector lab there. He is well known for vet tick diseases. My tests are low priority there b/c they are a vet lab and I am a human (obviously!) lol I will be curious to see what they come up with.

My doctor is sending blood to Fry and the vet lab in hopes that a pathologist in a local hospital can do the same tests after correlating results.

My Babesia tests are negative, thankfully! My brother had that and it was $$ and gross to treat.

The endo said "I think you have untreated CNS Lyme. I told him all my tests have been negative. He said, doesn't matter. You may not be making enough antibodies to detect.
After the horrible neuro visit, he referred me to the doctor I see now. He thought going to the neuro was the easiest route to treatment.

My first test was 3 years after the rash and it was the ELISA.

I actually (almost) argued with the LLMD (actually he doesn't go by that title) that no doctor ever saw my bulls eye rash. He told me that the first thing he needs to do is trust the patient. He said he has gotten good at reading people and what they tell him.

Are you being treated?

(My post got a bit out of order somehow. I hope you can make sense of it.)

[jason80]

No, I'm not taking any antibiotics. Taking some drugs to minimize some of these painful symptoms.

[kitty9309]

Have you had a CD57 test?

Whata are your main symptoms? Mine are neuro, mostly dizziness.

[jason80]

Mine was 42 indicating chronic Lyme by my LLMD. The IDs don't use this info.

My main symptoms are neuropathic pain, visual snow, tinnitus, stomach problems, cognitive impairment. You can see my full list on my profile.

[jason80]

Sorry I missed your post on Dec. 28th. To clarify:

My belief (based on numerous Lyme-related posts) is that most people concerned about Lyme fall into my camp that I described above: Negative by ID via CDC test criterion and Positive by LLMD via clinical dx. I realize this still isn't a perfect splitting, but I think its as good as I can do. Note that I specifically requested only those to vote that are NOT positive by CDC (presumably anyone with firm dx takes antibiotics which skews the poll).

Since antibiotics carry potential downside, or presumably lack of upside if one does not actually have Lyme/bacterial bug, I'm simply trying to gain feedback from this audience on the probability that antibiotics are worth trying. Hope that clarifies.

[EricaO]

Hey there!

I posted a long post on the "joint pain topic" with my history of Lyme. I am currently being treated for the third time. Twice this year. The first time being in 2002.

I do not think I could function without the antibiotics and supplements I am taking.

I have been on my current treatment plan for almost 60 days and although I am taking 35 pills a day it is well worth it!!!

I take 400mg of Doxy daily, and 1000mg of Ceftin daily. I am also taking 14 supplements with the antibiotics daily as well. The largest concern to date with the high dosage is liver complications but luckily to date I have not had any issues.

The thing that drives me mad with Lyme disease is even if you find a good LLMD they base their treatment plan on symptoms...and my biggest fear is I am going to get to the point that I am so sick of being sick that my mind tricks my body into thinking I am well so I can stop all of the maddness.

I was an avid workout warrior and lefted 15-20 pound dumbbells, and when I tried to lift 5 in each arm the other day I struggled. This is a huge bummer for me, but I know it is just something I get to go through and I will get through it and so will you!!!!

[wonko]

I did not vote, just because I'm not sure where I lie:

I tested negaitve on two ELIA's in Jan and July '08, and my CFS was also negative in July 08.  I saw an LLMD in late Nov. '08 who gave me a clinical dx and started me on abx.  I just found out that the bloodwork ordered by the LLMD supports the clinical dx, but since these were non-standard labs and tests, I'm not sure if my serology would be accepted by an ID or other mainstream doc.

I've been on abx for about 3.5 weeks, and I am certain that my condition is responding!  I'll be adding a 2nd abx soon.  I'm still on all oral forms, no IV yet.  

I do wish I had started sooner, as it is not an instant recovery, but instead has ups and downs.  But, I do feel it is a recovery.

[JackieCalifornia]

I'm in a similar situation as Wonko.

[cindy903]

i have no idea...they said I was CDC positive and sent my tests along. I shared them w/ a rheumy and he scoffed and said yes, those are Lyme bacteria bands, yes, but you're still not Igg. And Igg is what counts. Maybe not ?

My neck is still killing me even w/o a test. Antibiotics haven't cured me either, so even though I feel better, they are of limited effect.

I want a NEW drug. (Huey Lewis and the news)

[jason80]

If the IDs or PCPs give you negative dx by ELISA, you should feel free to vote by my criteria -- even if no one believes their opinion!

[jason80]

The terminology for CDC criteria is confusing. CDC invokes a criterion for number of bands in the IGG (5/10) and IGM (2/3), but then also has a criteria stating that IGG needs to be positive to have a positive dx.

For example, for one test, I was + for IGM based on CDC criteria for number of bands, but - for IGG, and therefore, overall negative by CDC criteria. Assumption according CDC is that my IGM was a false positive. Whether this is a good assumption or not, I have no idea.

[cindy903]

I voted. I have a positive Western Blot. They told me they sent my results to the state. Maybe that's a different criteria. But the state reports to the CDC. I don't care. I have enough proof. I wonder if I made a mistake. I will pull them out to see again.

[patsy10]

I would doubt the false positive.  I think people are more likely to get a false negative.

[cindy903]

I think they should throw out all Lyme tests!!! False positives and false negatives.

There are a couple Lyme tests being developed that look really promising. One at VCU and the other at University of Louisville. Hope is on the way (in the way of testing at least.) I think I'm going to contact them to see if they need volunteers.

(Sorry. Feeling more cynical than I usually do.)