posted
I have probably had lyme for 6 or so years... tested pos for lyme and neg for co-infections by Igenex, Stony Brook, and the lab in Hamilton, NJ. My main symptoms are extreme fatigue and poor memory (also have hypoglycemia, food intolerances, low body temp, minor tingling in hands and feet).
I have been on doxy for two months now at 300 mg a day (100 mg 3x a day). The first month I also took biaxin twice a day. The second month I switched to ceftin at 1000mg a day (500 2x a day).
I have become more tired and maybe have less memory... and the back of my head gets hot. Otherwise, my symptoms have stayed pretty much the same. I go to the doctor again soon. What should my next steps be? I feel that I should be having more of a reaction to the meds. I guess because before I started meds. I took Cats Claw for a month and noticed more tingling. My LLMD said if my symptoms are worse (which I guess fatigue at least is) that we should consider IV. What IV drug is the best? Any other suggestions? Higher doses of oral meds?
Also, I have an MRI scheduled for Monday. I am nervous what it will show.
Thanks for the help.
Posts: 35 | From baltimore, md & nj | Registered: Apr 2006
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
You may not like the sound of this, but two months of abx is not enough to make any type of huge determination as to whether or not they are working.
Some people's symptoms DONT increase, they just leave. That was true for me with some of my symptoms. And yeah, some of them smacked me right in the head and shoulder and neck...
I was sick for 9 months before diagnosis and it took me 2 years of steady antibiotics and one year of alternative therapy to get where I am today ( which is 90 percent better on my good days which I have ALOT of now) I never did IV. I did all oral abx,
and all injections. Bicillin works great. At least *for me*
Im not saying this is written in stone, but be patient. I know it sucks. Ive been there.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
Thanks. I agree. I know that it may take longer. Just not sure if I should be taking higher doses of antibiotics. or try IV? I do not have my blood levels for doxy tested. I think this is rec in Dr. B's protocol.
Posts: 35 | From baltimore, md & nj | Registered: Apr 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
hang in there KEH,
You may have a way to go...
Chances are the MRI won't show anything..
There are some neuro llmds that can read an MRI and determine if there has been brain dammage due to neuroboreliosis(infection) due to little white dots...
Most times we lymies have normal MRI's...
Spect scans would be better......blood flow to the brain I believe...
IV ceftriaxone(Rocephin) is the usual prescription...Vancomycin is probably the best but is usually the "last ditch effort" abx...
It's also reputedly bad news for the gallbladder..sludge wise..
You may want to try IM penicillin first...
I had some good success with that in the past...
GOod luck....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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bettyg
Unregistered
posted
K, go to Treepatrol's NEWBIE LINKS at the top of medical. Read thru there until you get to brain scans, MRI's, etc. In there he added for me about HARVARD'S MRI's showing what lyme, MS, etc. look like.
I tried to get this to my radiologist before he read my MRIs, but the RN/anestheologist, sp, would NOT give him the web links!
Radio... was kind enough later to make a CD of the MRI for me to take to me LLMD.
Yes, lyme has it's OWN time table which does not agree with ours. Patience is NOT my virtue either but we have no choice. We must learn it.
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posted
If you're a big guy, you may need 400-600mg of doxy. And yes, way longer than 2 months. If you do IV Rocephin, make SURE they give you something to bust up the cysts that the Roc will create. [many abx create them...not to worry]
Everyone needs to take cyst busters like flagyl, tinidazole, or tindimax at one point or another.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Maybe you haven't found the right combo for you. Maybe the abx your on will work with time. I have done well on IV I have done well on orals.
For me I think the IV worked faster but I also plateaued faster.
One thing I wanted to make sure you understand is that the tests for coninfections are not reliable. You can test negative and still have it.
I think that you and your dr. have to figure out what is the best route for your health and lifestyle (IVs are a bit inconvienent if you are working and have a life)
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