posted
My LLMD dxd me with bart last october and gave me orders for 2 weeks of tindamax and invanz. 4 months later after going thru 3 PCP's who would not give me the abx I found one that would. I started and the 1st week I felt very fatigued and a slight onset of some symptoms that I havn't had for a while. I was emotional, and my appetite decreased.Suddenly I was having vivid dreams. Week 2 more fatigue and symptoms seemed worse. I would wake up in the morning shaking with internal tremors,and extreme anxiety. My head felt full and all day I felt tired and bad but around 8 pm every night my appetite would come back and I felt slightly better. Day 14 came around and it was very strange. I still had symptoms but I felt energetic almost like a euphoria. I thought it would dissapate after a few hours but it lasted all day. I didn't feel anywhere near %100 but I felt like there was a break in the clouds. The next morning I felt bad all day, maybe the worst day of the 2 weeks. My gland behind my ear was tender and swollen. The day after that I felt horrible when I awoke but after an hour suddenly I felt energetic again. This lasted for a few hours and then I felt bad again. Two days later I saw my LLMD and explained it to him and he referred to what I experienced as a "window" and he felt this might mean progress. I wondering your thoughts on my experience and whether It was the drugs giving me a reaction or did I really make a step foward. Doc ordered me to immediatelly get back on ABX but suddenly my once willing PCP will not sign the orders and I am once again searching for another pcp who is willing and I'm afraid I may have wasted those 2 weeks by not continuing the meds shortly after.
-------------------- Neuro symptoms since 1995. Dx'd Bart in 10-09. Biaxin/Tindamax 10-10 thru 2-11 Factive 3-11 thru 5-11 Factive/ Rifampin 9-11 thru 11-11 IV Rocephin/ Tindamaz. 11-11 thru 1-12/ IV Rocephin/ Flagyl / Factive 1-12 thru present Posts: 69 | From Florida | Registered: Dec 2009
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posted
Sounds like a herx to me. 2 wks is not enough to get rid of it though, you need to stay on them for a while or you will go right back to where you started. Can't your LLMD prescribe the abx? Why do you need to get them from a PCP?
Posts: 453 | From TX | Registered: Aug 2008
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
I'm puzzled as to why you can't get abx from your LLMD? Makes now sense.
Same question as VB, why can't you get your LLMD to rx your abx? No need to deal with you PCP for this.
posted
My LLMD is 4 hours away and tells me that there would be problems with my insurance since they are out of network.
I'm wondering how my insurance looks at it now that I'm changing 4 pcp's in 4 months.
-------------------- Neuro symptoms since 1995. Dx'd Bart in 10-09. Biaxin/Tindamax 10-10 thru 2-11 Factive 3-11 thru 5-11 Factive/ Rifampin 9-11 thru 11-11 IV Rocephin/ Tindamaz. 11-11 thru 1-12/ IV Rocephin/ Flagyl / Factive 1-12 thru present Posts: 69 | From Florida | Registered: Dec 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Sounds about right. A lot of patients experience a "stock market" like response when first using antibiotics. Zig zag. Ultimately, if treatment is working, the "trend" of the Market should be bullish and climbing. Your health should get better overall within months (1-6). If within 6 months one particular combination hasn't made any impact at all, that's the time to switch.
This is based on the limited information I've seen help others. One LLMD I see said that's stupid. She said you should know within a month or two if the drug is right for you. Other patients don't know if the drug is right for up to 8 months. So, you have to decide who to follow.
If you're responding quickly like this, then your LLMD is probably doing the right things.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Mine is 4 hours away and he prescribes my meds. If you fill you antibiotics where you live I don't think there would be any problems.
Posts: 56 | From Austin, Tx | Registered: Aug 2009
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posted
That's what I don't understand. He prescribes my oral abx but won't start the IV. His nurse mentioned to me that it would be hard to manage me being out of area since he already deals with a lot of patients in his area so I don't think it's something he can't do. I think he's trying to make it easier on himself.
-------------------- Neuro symptoms since 1995. Dx'd Bart in 10-09. Biaxin/Tindamax 10-10 thru 2-11 Factive 3-11 thru 5-11 Factive/ Rifampin 9-11 thru 11-11 IV Rocephin/ Tindamaz. 11-11 thru 1-12/ IV Rocephin/ Flagyl / Factive 1-12 thru present Posts: 69 | From Florida | Registered: Dec 2009
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posted
mine is 6hr drive, out of state and prescribes my meds, no problem getting them filled at my local pharmacy......I can understand it may be more difficult for the IV's if that is the problem....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Tgym - Your LLMD takes insurance?! How fortunate you are. There are a lot more complications with IV abx for LLMD's who take insurance than to rx orals. There is a much greater risk of encountering trouble with ins. co. and medical establishment if IV is rx'd to someone who lives outside the immediate area. Usually, an ins. co. won't okay IV for more than a few weeks. Could be by keeping you on orals, the LLMD is keeping the door open for long-term tx for you. It's a real Catch 22. Hope you get the help you need soon.
MB - Love the stock market references!
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Ping is correct & it is a risk for ANY llmd to rx I.V. to someone inside or outside immediate area.
Some will if your PCP is friendly to the treatment & will be available if complications arise.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Mine's about a four hour drive, he prescribes my meds and prescribed me the IV.
I did have to drive the four hours to a hospital near him to get the PICC placed, though. I couldn't get my PCP to cosign the order (since he think I just have Fibromyalgia, and should learn to live with it).
As far as getting the IV meds themselves, they were shipped to me from a home health place near his practice.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
Ping No maybe I worded it wrong but he does not take my insurance. He prescribed me the orals but is leaving it up to a PCP to set up the IV. I am trying to set up my IV at an infusion center near me rather than get home health care. My thinking is that it will be cheaper on my insurance company so that maybe less red flags will arise and it might take them longer before they tell me no more ABX. I don't know if that is the case but I'm trying to fly under the radar for as long as possible.
-------------------- Neuro symptoms since 1995. Dx'd Bart in 10-09. Biaxin/Tindamax 10-10 thru 2-11 Factive 3-11 thru 5-11 Factive/ Rifampin 9-11 thru 11-11 IV Rocephin/ Tindamaz. 11-11 thru 1-12/ IV Rocephin/ Flagyl / Factive 1-12 thru present Posts: 69 | From Florida | Registered: Dec 2009
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posted
I've been off the 1st round of ABX for a week and a half now while I'm waiting to get started again and the last week I've felt really bad. Worse than I've felt in a while Does this make any sense. Is it related to the starting and stopping of the ABX?
-------------------- Neuro symptoms since 1995. Dx'd Bart in 10-09. Biaxin/Tindamax 10-10 thru 2-11 Factive 3-11 thru 5-11 Factive/ Rifampin 9-11 thru 11-11 IV Rocephin/ Tindamaz. 11-11 thru 1-12/ IV Rocephin/ Flagyl / Factive 1-12 thru present Posts: 69 | From Florida | Registered: Dec 2009
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