posted
I was 'clinically' diagnosed with Lyme about a year and a half ago when I finally found a doctor who recognized my symptoms. I had spent several years seeing specialists, but never diagnosing anything specific. Here is my dilemma. I've been on Doxy since being diagnosed; recently added Flagyl to the mix, was treated and 'cured' of Babesia, continually fight EBV, immume system is constantly suppressed, and have all the neuro symptoms for Chronic Lyme. I am continually tested for Lyme, but have never positively tested for it. I've gone the IGENEX route and got a similar result...one or two bands, but not a qualifying positive. The result is that I'm constantly on oral AB, and can't qualify for IV AB. I added Burbur, Cumanda, and Samento to the mix recently, too. I have several questions as to what path do I take? Will the recent Flagyl/Doxy/Samento combo eventually help? Is the IV AB route the only way to eventually get better? Other recommendations? If so, what can I do to facilitate a positive test for me? Do I have Lyme...can my symptoms be attributed to something else? It seems recently sporadic chest pains/along with the continual anxiety/heart palpitations has joined the fray. How much time do I give these medications to work? I'm asking for help to fill in some of these gaps and hope the forum can provide some direction/light at the end of the tunnel for what seems to be a never-ending roller coaster.
Posts: 2 | From Lexington Park, MD | Registered: Feb 2011
| IP: Logged |
posted
There are other oral meds besides the ones you have been on. Sometimes switching to another drug kills off bacteria, causing an immune reaction which might be picked up by another test. However, don't use the ELISA. And even if you don't retest, it might be worth switching meds.
Don't understand what the connection is between positive test and IV abx. Are you saying the ins co requires this? Or is it the doctor? Or both? If you are trying to satisfy the ins co, keep in mind that they are still not going to treat you very long with the IV, even with a positive test.
What about bartonella?
What doses are you taking of doxy and flagyl? Are you having any trouble with the flagyl? Some people take tinidazole instead because flagyl can cause peripheral neuropathy. Other people have no trouble with it. Are you on anti-virals?
This is not a disease that one treatment fits everyone.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
Lou, Thanks for the reply. I'm slowly starting to grasp the impact of Lyme, but there is still so much that I don't know. I see so much info out there, it's hard to muddle through what may be applicable to me...and what isn't. As you said it's not a disease that doesn't fit everyone. It seems I've been in limbo with the medications I'm taking....I'm not getting better, but not worse. But, it's not a spot I want to remain in. I want to have some path forward that I can look to. I'm currently on 200 mg/day Doxy and 1500 mg/day Flagyl. I can tolerate Doxy fairly well and have been up to 600 mg/day at one time but never improved. I tolerate Flagyl okay, at least I think so...it's hard to determine if it's symptoms or side effects. I've never tested for positive for Bart. I was under the impression that IV AB is the only chance for 'cure', but don't know if it's true. Yes, with my insurance I require a 'positive' for prescription. As for anti-virals, I'm unsure what they are, so the answer is no. At this point, I'm in info gathering mode and trying to just learn. Please feel free to pass on any info, I would definitely appreciate any assistance! thanks again
Posts: 2 | From Lexington Park, MD | Registered: Feb 2011
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
You say you finally found a doctor. Is this an LLMD? Have you ever treated for parasites? Ever left the country?
I don't know why Doxy wouldn't hit the lyme at least some.
While I have never done any personal research on EMF's, you may want to look at this too. Some folks here have had success with eliminating wifi at night, not carrying a cell phone close to body, removing wireless phones from house, etc. Also, mold exposure, yeast & heavy metals can be big issues too.
Sounds like you've got to take the bull by the horns. I've never heard of IV AB the only chance for "cure". Find the Burransco guidelines and read them, then read them again.
Good luck and to a speedy recovery.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
posted
Well, if you have been on doxy for a year and a half and not seeing progress, then you should try another antibiotic or combination of antibiotics. I am wondering about your doctor at this point, that he has not made this suggestion.
And another possibility is that doxy is working on the lyme, but you have untreated coinfections that are producing some of the symptoms and need different meds. Many people have lyme +coinfections.
I second the motion for you to read the Burrascano guidelines. Here is the link:
If you have had symptoms for more than a year, it is high time you got yourself educated. An informed patient is an absolute necessity with tickborne diseases.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hey, if you aren't noticing improvement after 1 1/2 years of treatment, you may need to consider changing doctors.
Many doctors treat lyme, but only a few know enough to get rid of it for a person. It takes an awful lot of expertise, gained by years and years of treating this particular complex disease.
I am in Maryland also. Why not send me a private message and tell me who your doctor is. If he's not top notch, I can give you some other names.
Just click on the icon of 2 people and envelope and tell me his name. I know all the docs in Maryland that treat lyme.
I went through 2 other lyme doctors in Maryland before I found the one who cured me. In March it will be 6 years since I completed my treatment and I am still symptom free, enjoying my life.
I hang around LymeNet to help people get to the good doctors. I hate to see people waste time like I did with a doctor who doesn't know enough to get them well.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
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