posted
I have been in treatment since April 2010 with a LLMD. Most likely have had Lyme for 10+ years, with multiple misdiagnoses before MD did a WB (saw MD before LLMD).
Elisa borderline. Only 41k IGM & IGG as well as unidentified bands have come back positive during the past few months(Stonybrook, Quest, and Labcorp). Also negative for BABES & BARTS.
All of which makes me wonder??? Do I really have Lyme Disease??
I have all the clinical symptoms of Lyme and therefore the LLMD diagnosed me with Lyme.
I cannot afford Ingex at this time and since my LLMD has clinically diagnosed me with Lyme I decided not to spend the $$ for Ingex).
I have been on multiple antibiotics..series Doxy-then Amonicillian, Biaxin, was on Biaxin and Mepron for 1 month (insurance comp. would not approve more). Then Biaxin and Flagyl.
During the last month I have been on Biaxin, Ceftin and Flagyl. Also B Complex because my fingers and feet have been becoming more numb and tingly lately.
All blood work is normal, except a bit high on cholesterol.
My LLMD suggested (last month) that if there was no improvement with the 3 oral antibiotic combination (which there does not seem to have been remarkable improvement) then I need to consider IV Antibiotics when I meet with him tomorrow.
Some days are a bit better than others. No real herx as far as I know...but the joint pain, night-day sweats, seem to more intense 3 weeks into changing antibiotics. I still have foot pain, especially when I get up in the morning.
I have an appointment tomorrow. Beyond being frightened by the PICC Line my insurance company (Health Net) is going out of business (covered until mid-December) and will only cover 28 days IV at this point.
I will change insurance company in January (not sure which company) and will have to pay out of pocket if I stay on IV antibiotics.
Question: Is it worth trying IV antibiotics for 28 days. I cannot afford out of pocket.
Have been able to somewhat tolerate oral antibiotics. I take probiotics, and so far clear of yeast infections.
I work FULL time and am concerned about side effects of IV antibiotics as well as taking care of the PICC line (not sure what to expect).
I also live alone and do not have support related to all of this, especially in relation to making the best decision at this point.
I know it's my decision, just looking for suggestions or advice as to questions I might ask of my LLMD.
Thank you for your consideration. Best, p.
Posts: 119 | From New York New York | Registered: May 2010
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posted
We found less side effects w/ IV since going straight into your system. We only did 1 month of IV's but it did help get over the hump; about 3 weeks into saw improvement.
Don't see it impacting ability to work. We did IV in the evening. It may take a little getting used to trying to do the connections yourself.
We had home health nurse who came weekly and changed the dressings. that was paid for via insurance too.
Posts: 126 | From MD | Registered: Mar 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
You could ask your doctor to consider Bicillin LA injections before trying IV's.
Posts: 5237 | From here | Registered: Nov 2007
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Had appointment with LLMD today. After lengthy discussion; decision was made to have PICC Line and IV Antibiotics.
LLMD's office is in the process of getting approval with insurance company. Most likely will happen next week. Outpatient etc. Home nurse.
Nervous about all of this!
LLMD did speak with me about co-infections. Believes I have Babes as well as Lyme.
Felt more aggressive treatment is necessary due not getting better with the various oral antibiotics I have been taking for the past 6 months.
Any further comments will be most appreciated. Thanks, best, p.
Posts: 119 | From New York New York | Registered: May 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Piper, how's it going?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Insurance company denied IV antibiotic treatment and they are going out of business soon so there is no sense in appealing it.
My LLMD has put me on another series of antibiotic combination: Rifampin and Penicillin this time.
Feeling very discouraged. Feel a bit better off the last series of Fagyl, Biaxan, and Cefin (?spelling) which I was on for 2 months.
Feet a bit better; however, the Rifampin gave a a major migraine the first day and night which scared me.
Seeing LLMD again next Thursday and not sure what to do at this point. Cannot afford IV out of pocket. Thank you for asking. Best, p.
Posts: 119 | From New York New York | Registered: May 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Oh Piper - that's awful. I just read the post "Insurance Company Denied IV Treatment" and got caught up on what happened (is happening) with the insurance company.
My son was on Rifampin and Minocycline for 28 days in September... he had headaches too -- but they have been nonstop since he got sick, so I don't think it was the drug.
I wish I knew something that helps the headaches. Unfortunately, tylenol and advil don't help. I know. I'm watching my son suffer.
My prayers are with you! <3
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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