seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Well, we drove 100+ miles to see my LLMD. He has decided he's giving up on me and insinuated he doesn't think Lyme/Babesia is my issue. I got the impression he's not sure of his Dx.
He told me to stop all antibiotics and anti-malarials. I treated for 6 months. My course was:
Month 3: Mono Zith (500 mg); Malarone (2 tablets for per day)
Month 4: Ceftin and Biaxin (1,000 mg daily)
Month 5: Mono Zith (500 mg) and Malarone (1 tablet per day)
Month 6: Mono Zith (500 mg) and Mepron for 7 days (maxed at 1/2 tsp daily).
Somewhere between month 5-6 I took 10 days of Clindamycin (330 mg 3x daily). It was the best 8 days I had in a long, long time. My ID doc cut me off.
He basically met with me for 1.5 hrs and said no charge for this visit. Go see some other docs. He thinks Lyme is not my root cause. I questioned his treatment protocols and lack of success and he just didn't feel pushing more aggressively would help. He recommended following up with other specialties. He said he was overwhelmed and couldn't get his arms around my case since he was a Family Doctor. He said every month should be a little bit better if I'm responsive to Abx.
I wish I could get back my thousands of dollars and time. Sad. Now, I'm in a real bind. Out of work 16+ months, feeling terrible 90% of the time, nauseated, severe bone pain, muscle tightness, etc.
He was basically the only LLMD in our state. There is another ID doc who treats, but he doesn't think I have Lyme and only treated for 30 days.
I guess now we'll see what happens. Maybe it's for the best. My wife truly questions my Lyme Dx.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
did you have any testing done?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
He never ran a test for Lyme/co-infections. 95% of his Dx are clinical. I had several done in the past by other docs:
Jul-08 through Dec-08 - multiple tests for all co-infections through commercial labs - all negative
Dec-08: Lyme WB - LabCorp: IgM: None; IgG: None
Jul-08: CD-57 LabCorp: 54
Oct-08: CD-57 LabCorp: 54
Dec-08: Muscle biopsy PCR test for Lyme - Clongen Labs - negative
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Sorry seek
I can't remember....did you have a positive lyme test? Did you have any bands come back positive on your western blot?
I do know there are a couple LLMDs in Ohio....or you could always go see the one in Missouri....that is, if you feel this is a route you still want to go. I realize cost could be an issue; I don't know many people for whom it's not.
So far you haven't tried too much, so I think that continuing to try to treat Lyme wouldn't be a bad idea, but I think above all you should gather advice and then go with your intuition.
I know people who see LLMDs in various parts of the midwest, so if you would like more info on any of those docs, etc, just PM me.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Another thing you could do, if you want to go "cheap", and answer the question, "is Lyme even a possibility?" is order a couple antibiotics online, and try them for 7 days each.
For example, I herxed HARD on Bactrim for 7 days (unlike anything I had ever experienced), and then when I saw an LLMD, this was GREAT info for him to have.
Note: this method of course can be dangerous...you're playing with drugs, and when you take into account allergic reactions, etc...it's not child's play. Of course this method isn't preferable, but it's efficient, though of course potentially dangerous. I wouldn't mix drugs or attempt to treat yourself, I would just try a couple drugs from different classes to see if you have Lyme. If you herx, you'll know.
BUT, if you are out of money, and desperate to know if Lyme is in you........it's just a thought.
So if you would like the names of any online pharmacies also, once again, PM me.
Posts: 4590 | From Midwest | Registered: Jun 2008
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bettyg
Unregistered
posted
seek,
so sorry to read this that he dismissed you and this time a FREEBIE!
check your profile; i'm sending you s. wisc. llmd info; reasonable! good
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
seekhelp it seems pretty clear to me (in my personal opinion) that you have Lyme, and that you were actually responsive to Clindamycin, and yet your "LLMD" (or was it another Doctor?) for some reason removed you from beneficial treatment.
That doc seemed to only want to give you Zithromax for some strange reason - it seems he was applying a monotherapy for the Lyme treatment except for one brief month of Ceftin with Biaxin. From all I have read and experienced, you can't expect much if anything in one month.
Your best prognosis is to find a true LLMD who will be flexible and adaptive to your needs and clinical presentations. I highly highly recommend you see Dr C in Missouri. That is my LLMD.
Do whatever you can to get there - perhaps enlist a friend to drive you there, maybe ask for help from extended family or friends to help defray costs, etc. Get to a real Lyme specialist. This doctor I mentioned is flexible in working with your local primary doc to decrease the frequency of long trips.
Remember that responsive 8 days, and hold onto it. It is important!
Also - regarding Lyme test results - please please please read Dr C's Western Blot explanation - you have Lyme-specific bands.
schedule appts. for SAME DAY so you can split travel expenses, etc!
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Are you sure this person is an LLMD? Are they a member of ILADS?
The treatment for babesia was not enough anti-malarial medication, at least from what I've read and from what I've heard from others. You must be treated with hefty doses for 4 months straight at a minimum. The life of the red blood cell is 4 months and babs lives in the red blood cell.
You do have lyme specific bands. I'd get to an ILADS LLMD who has a good reputation and get another opinion.
What was your response to treatment? Did you have a herx?
Edited to add:
You wrote: He said every month should be a little bit better if I'm responsive to Abx.
Not true for many that I've seen detail their history here and it was not true for me. After almost 3 solid years of aggressive treatment I'm finally starting to feel better. I got a lot sicker for awhile.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
seekhelp~ If I remember correctly, you had high antibody titers to Cpn. Perhaps you should check into that more. Did you get tested for entrovirus at Arup lab?
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Seek,
Where are you?
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks everyone. I'm still here. I appreciate all the advice / feedback.
To try to answer some issues, yes, I believe I did herx substantially from some Abx, especially when first taking them. Ceftin really caused some neck throbbing. The first two days of Clindamycin were bad, but then things got better.
I was pulled off meds pretty much everytime herxing got bad by my former LLMD.
Was this doc a member of ILADS? His new patient paperwork kind of insinuates that, but I personally don't think he keeps up with current protocols. I'm not going to bad mouth this person as he was respectful at my last visit and at least tries to treat patients with these horrid diseases, but I'll just say care is definitely not aggressive. The LLMD seems to have had trouble understanding my issues and how important it was to improve.
Ironically, my former LLMD was not the one who Rxed Clindamycin or the Biaxin/Ceftin combo. It was an ID doc. After begging one month, he did add Omnicef to my Zithromax protocol. I didn't do it long as I moved to my ID doc's protocol of Biaxin/Ceftin for 30 days. After this, the LLMD didn't seem to have any interest in combination Abx. Cyst busters were NEVER talked about.
I'm just so frustrated. I feel like other issues may be going on as well. I'll never know why the doc decided to not treat anymore, but I think it's possible it's more than just me not getting better every month. I've got ideas, but who knows. I'm sure this has happened to others out there with other LLMDs?
Timaca, yes I had an elevated Cpn IgG titer (1:256). No docs here cared one bit and said it's a past infection. Educating themselves is a low, low priority for all MI docs I've encountered. They want easy $$$ and low office visit time.
I don't exactly understand what an 'enterovirus' is, but I was tested for some things through ARUP when I pushed my PCP for tests. I had elevated Coxsackie B3, B4, and B7 Ab levels, but not ridiculously so. Normal was <1.10. Mine were 1.20, 1.40, and 1.40 respectively. There were tested via blood. Mean anything?
I'm not sure where to go from here. I spent some time tonight going through 11 years of labs and putting together an Excel sheet with every abnormal lab result, test name, date ran, lab used, and norms and my values. Doctors are too lazy to read so I'm trying to create the Cliff Notes version. Ridiculous, really.
I also have this summary for all major diagnostic tests done over this period too, including comments on whether the tests were totally normal or showed something suspect.
I wish I had a job where my clients had to do all the work and I got paid the big $$$.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Seekhelp~ My understanding is that antibody titers of 1:320 or above may be indicate of active coxsackie B infection.
Out of everything you've been tested for, it seems that your Cpn titer is what stands out as being a concern. I'm sorry you cannot find a doctor to help you. I guess I'd try e-mailing or calling Dr. Statton again and seeing if he would talk briefly with your PCP or anyone who would be willing to address your Cpn issue.
Good luck, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks Timaca. I agree about the Cpn Dx. I wish there was a way to culture it in tissues. No docs here think it causes any issues.
I'll try contacting Dr. Stratton again, but I'm shooting 0% contacting these big wigs. They don't bother responding to any e-mails.
You must be more pursuasive than me. My two biggest concerns are Cpn and EBV. Lyme maybe?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Seek, there are alternatives. Maybe you are one that doesn't respond to abx. It's not uncommon to have abx failures?
Just some things for you to think about. In case, you don't already have enough to keep your mind going?
6 mths might be short of finding that answer? But nobody knows.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Sad. Now, I'm in a real bind. Out of work 16+ months, feeling terrible 90% of the time, nauseated, severe bone pain, muscle tightness, etc. 
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