posted
I saw Dr. D Friday, told him I've reached a plateau not getting any better(on this mixture for 2 years) , not worst on Biaxin & Plaquinil mix. Taking amantadine for fatigue and it's working, neurontin for pins &needles not working. Baclofen/spasms/sleep & nortriptyline for sleep. I have had lyme for 4 years, only treated for 2 years.
Question: He has taken me off the biaxin & plaquineil all togther to see if I stay the same or get worst, sounds like trial & error, if I get worst he'll put me on another abx and in fall will discuss the IV meds. What do you think of all this? Normal procedure?
-------------------- MammaChase Posts: 190 | From Bourne, Massachusetts, USA | Registered: May 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Why hasnt the Dr just take away biaxin and replace it with say omnicef or any other abx?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
zirithomax(which he said is a stronger one) he said he'll put me on if I get worst again. I felt he was offended because I went to see a neurologist for the pins & needles and fatigue. This Dr. doesn't seem to treat any of my sysmptoms just rx's the antibiotics, no pain meds, fatigue etc. meds.
-------------------- MammaChase Posts: 190 | From Bourne, Massachusetts, USA | Registered: May 2004
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posted
Most neurologists aren't any help when it comes to lyme disease. One I went to was hostile towards the idea of chronic lyme and too interested in who was treating me. Appeared to me he wanted to cause trouble.
This might be what your lyme doctor is thinking.
Plus, pain meds prescriptions these days are watched very carefully by the federal drug people. Can't have too many people free of pain you know, because someone might abuse it. Better to have a lot of people in pain than have one abuser.
My impression is that you don't yet realize the extent to which lyme politics and doctor persecution will affect your treatment.
Posts: 8430 | From Not available | Registered: Oct 2000
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suki444
Unregistered
posted
It doesn't sound exactly like normal procedure...a LLMD might treat different co-infections and if you are stable get you to take a break of a couple of weeks to see what symptoms come back but it sounds like you have been doing the same meds with not much progress.
Dr D does not seem to believe in co-infection treatment, this is my worry. He said there was no evidence to suggest chronic Babesia existed so he does not treat it!
IV may be helpful but if you still do not make much headway do consider co-infections and another LLMD.
posted
Dr. D did the same thing to Greg. He had been on the meds for awhile with no change and we questioned if he really did have lyme (drs for 2 years had been telling us he didn't have lyme and lab results were inconclusive). We weren't sure what to believe.
He told us to take Greg off the meds and see what happens if we didn't believe him. He seemed insulted that we were questioning the lyme and the treatment.
We switched doctors. Kathy Posts: 64 | From MA | Registered: Mar 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
If your still getting all these symptoms and you have been on one type or two types of abx's there either not getting the spirochetes or they are and its going take longer treatment.My LLMD after 2 or 3 months always checks one abx out and a new one in.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Definitely find another doctor who will take more approach than just loading you with obviously ineffective but potently toxic drugs.
I'm not against using abx, but there is much more involved with us that are chronically ill. If you are reading and researching, you will know this.
In addition to bacteria killing meds, we also need to bring our bodies to a condition that is inhospitable to bacteria and fungi. Read GiGi's recent post about vinegar just to get an idea of things we need to do to correct our bodies.
Right now, our bodies are conducive to bacteria and fungi hence we can't get well. In addition to Lyme, I have been diagnosed with Rheum. Arthritis which has a Camp A and Camp B of physicians just like lyme does. One camp says "no known cause, no known cure". The other camp believes in a bacterial cause with mycoplasma being the highest suspect. It also recognizes strep and borrelia as possible causes. Studies of synovial fluid around infected joints has found these 3 bacteria and only these 3. In my research of RA, I have learned there is no abx currently that can kill mycoplasma only suppress it.
Many RA sufferers are getting relief from low dose abx from the tetracycline family. This is a safe dose for longterm use (many will not come off it even though they are in full remission) I am taking minocycline.
Again, I believe we can only get well if we take more measures than just abx. We need to create a hostile environment in our bodies for bacteria and fungi so that it cannot thrive. When I changed my diet, my symptoms receded dramatically to the point I am able to do most everything on most days. I am very early into my treatment (2 mths) and still have flares, but am headed in the right direction. The fact diet is having such a profound impact on my body tells me this disease has a connection to my food intake. Why? This could be due to leaky gut which is causing improper digestion and allowing particially digested food to enter my body that was never intended. Tests have borne out that I do indeed have leaky gut so I am under a doctor's care correcting this condition.
I'm also looking at the amalgams and root canals in my mouth. I have sought two opinions from biological dentists and both opinions concur as to which teeth are infected. I do plan to proceed with this as a means of eliminating yet another condition that are enabling bacteria and fungi to thrive.
The leaky gut has allowed yeast to enter my bloodstream and may very well be the true source of my symptoms. I am also under a doctor's care for this condition.
If we simply had a Lyme bacteria infection, I believe abx would solve it. I have not yet read where there are no antibiotics to kill lyme.
But I believe those of us who are chronically ill have more than just Lyme.
You need a doctor who feels the same way and is willing to investigate and prove or rule out contributing factors.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
It seems odd that you've been on the same meds for so long. Most LLMDs like to change the abx every few months.
There is no reason why your LLMD should not be treating the symptoms of Lyme. If you don't treat your pain, you will not get better. It puts too much stress on your immune system.
I personally got my pain under control with a pain management specialist. It didn't matter that he didn't believe I had Lyme or that he didn't know how to treat Lyme. He knew how to control pain, and I'm living a much better life because of him. My LLMD is wonderful, but not a pain specialist.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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