Your dose of doxy was not enough to knock out the lyme...and the very reason why so many of us are hanging around here for so long! We weren't adequately treated first time around.

You are looking for an antibiotic cocktail, and that is good. Unfortunately, what works for one may not work at all for another.

What you really need is to find yourself a lyme literate doctor and take his/her advice on treatment. Until you do, imo, you are wasting your time. You will get better, but only if you seek the right help!

Wish you luck. nan
 

The current situation, in terms of the medical profession's take on Lyme, is somewhat comparable to it's position on gastric ulcers fifteen or twenty years ago.

The majority "knew" that ulcers were caused by excess acid whose release was triggered by stress (or a characterological inability to handle normal stress). As it was proposed that gastric ulcers were primarily caused by h. pilori, a huge controversy blew up and proponents of that theory were criticized and disciplined for mistreating their patients with antibiotics. The fly in the ointment, of course, was that the patients on antibiotics got better and the renegades were proven correct. Informed patients who tried to get effective treatment, at that time, must have encountered many obstacles.

Lyme is a clinical diagnosis. Treating it is always a leap of faith. A lumbar puncture is not an entirely benign proceedure, has low yield, and false negative results can impede access to treatment.

If you search back through posts here, you will see that people routinely relapse after taking IV Rocephin, often in days. Part of the problem is that the cost and venous access cause pressures to circumscribe the length of treatment. Further, there is evidence to suggest that Rocephin stimultes the bacteria to change form and become inactive, invulnerable to antibiotics, and undetectable by the immune system.

This results in "cure," so long as the follow-up is short enough to avoid recording the relapses.

At minimum, you also need a macrolide such as Azithromycin or Clarithromycin, which is continued LONG after Rocephin is witdrawn.

Unless you are really up to taking the helm in this matter, you need a doctor who routinely treats Lyme, not one who makes a career of explaining why it's untreatable. That would most likely be an LLMD.

My personal experience, one that gets quite a bit of support from the record provided by posts here, is that Bicillin LA (Penicillin G Benzathine, IM 1.2 MU three times weekly) and Biaxin (Clarithromycin 500 mg P.O. bid) is a regimen that provides a recovery that is stable and free of complications. It's a regimen that isn't for wimps but it really works well for many.

Regardless, if you start aggressive treatment, you can expect to herx, which may make your clinical rotation even more of a challenge.

This is long enough. Let me know if you want more of my insights/opinions.

David
 

I'm very concerned about your situation.
1) Your illness has progressed quickly.
2) The prescribed Doxy does not meet Dr B's recommendations.
3) Your immune system is suppressed.

You really need to see a LLMD to be sure you get adequate treatment - ASAP.
An LLMD will know the best combination of abx to try & also will evaluate you for Co-Infections.

I don't have a lot of time to retype info this morning.
Please read my response to your "spinal tap..." question.

IMO, you need to be taking the amt of Doxy Dr B recommends in his Guidelines -
400mg per day until all symptoms are gone for 4 weeks. Some are now saying 6 to 8 weeks.

If the antibiotic (abx) is inadequate, the stronger spirochetes are not killed.
You may feel like you're cured, but the bacteria will hide out, go dormant, until your immune system is overworked.
Then at some time in the future, the disease will flare up again, but it will be much more difficult to control.

If you are not going to consult a LLMD,
then I recommend that you take a copy of Dr B's "Diag Hints & Treatment Guidelines..." to your dr & see if (s)he will follow his recommendations.
Also, take "Basic Info" from www.ilads.org

You said the enbrel suppresses the immune system, so that is definitely working against you!!
Is there another prescription you could use instead?

You're fortunate to be in the Northeast where it is easier to find an LLMD.
I highly recommend you make an appt for an evaluation & then the LLMD could work with your local dr if (s)he is willing.

The decision you make now could affect your health for the rest of your life.
Considering how quickly your illness has progressed, I think you owe it to yourself to see an LLMD for an evaluation - ASAP.

This could be one of the most important decisions you make in your life.

[This message has been edited by cbb (edited 26 November 2004).]
 

Lumbar punctures have a very low yield for accurate tests. If it comes back positive, it is very accurate, but if it comes back negative it onlt means there was nothing in the sample. You can still be infected.

You best chance for accurate diagnosis and proper treatment is to see a LLMD. With a rapid progression of symptoms this is even more important.

200 mg a doxycycline is very likely to encourage resistance, making your infection harder to treat. Since you are already taking immune suppressants, you are at even more risk.

Only a knowledgeable doctor can assess what will be your best treatment.

While it is understandable that you want to get back to school, sometimes life (and illness) doesn't cooperate. If you persist in inadequate treatment, you are putting yourself at more risk for INCREASE of symptoms. You have to take the time to get proper treatment.

------------------
Sonoma County Lyme Support
[email protected]
 

You need a dr with LOTS of satisfied customers, and you have an excellent source right here on LymeNet.
The LymeNet family shared info with me that I consider life-saving - for my 12 yr old grandson & for my co-infections.

Go to Seeking a Dr here on LymeNet & put your location in the title. Info about LLMDs will be e-mailed to you.

You can also click Support Groups (on the left). Check with those in your state & surrounding states to see who they recommend.

The best recommendations for LLMDs come from Lyme patients.
 

It would be a good idea to pass on the tap and maybe the IV at this point.

I say this because I had two three month courses of low dose abx treatment (one was doxy), a little higher than what you had and rapidly got sicker, mostly neuro. I struggled and ended up on IV rocephin for three months. Had zith along with it.

I was sick again in a short time. I found a better/ real llmd and have been on long term abx for a year and a half. I'm much, much better. I still have neuro issues but not as bad.

The point is, the good folks here warned me repeatly about the downside for many who have IV rocephin. They were right of course.

Please listen to them and find a good llmd. Consider long term, higher dose orals first.

Mel