posted
I've been tested with ELISA Dec 2009 negative, but did have a general rash in June 2009, and current ID doc is giving me Doxy (1st 30 days at 100mg twice a day, then I talked him into doubling it the next 30 days, almost to the end of that round).
My worst symptoms has been leg cramping. It is mostly gone now, but constant twitching in my calves remain, and legs easily fatigue with more than 10 min walking.
I read I should be off abx for 2 weeks before a W Blot, and I think I want the W Blot, should I interrupt my abx for the test? I read that LabCorp should be used for the CD-57 test. What about the W Blot, LabCorp? Read below for a more or less complete description and history.
Background:
I live in SE Oklahoma, wooded area, spend time in the woods, get a dozen or so ticks a year.
Don't remember any specific tick, but do remember in June 2009 a strange rash like a heat rash that persisted for about a month in my groin area, and sunburn like patches that would appear different areas on my body during that month. Never had a rash like this before. Went away on its own.
Early July hurt my low back & left hip falling and accidently doing the splits. 2 week recovery, but then some knee pain developed (when standing or walking up steps) and shoulder weakness when pulling things from the side, late July 2009.
August began feeling fatigued. Urinating every couple hours with great urgency. Achy restless legs at night. My daily walks were 2 miles, now I felt fatigued doing short distances, leg muscles ached for 3 days after each walk. Scheduled an appointment with my family doc. By month's end felt very fatigued in AM as if I'd not slept at all. This began to subside before my appointment the 2nd week of Sept.
Doctor ran blood tests, took xrays, etc, never mentioned Lyme (naively I didn't consider it as I didn't have a bull's eye rash). A few things were slightly below or above range in the blood counts, retested 2 weeks later, again slight anomalies, sent me to a hematologist.
Before seeing the H-doc in October I was feeling alot better. Until I reinjured my low back loading hay bales. Had recovered from that before seeing the H-doc late October, except knee pain coming back. H-doc saw nothing unusual in blood work, retest in 1 month.
H-doc retested, said I was OK, I asked him about my knees, he suggested my GP doc test me for Lyme. That's the first I thought about Lyme as a possibility, and then remembered the rash.
Got the test in early Dec 2009. By then I was beginning to have cramps in my lower legs and feet. Tested ELISA for Lyme and for Ehrlichiosis, both negative. Again I wasn't smart enough then to know there were other Lyme tests. GP doc didn't know what he was doing. Said I must not have Lyme.
GP doc tested me for sleep apnea late Dec, while my cramps got worse waking me several times a night. Negative for the apnea.
Decided I spent too much on tests and began a "healing" low-carb diet. Cramps worse in January. I wrote it off to the cold.
February I had the GP doc test my Vit D levels. I was taking 5000iu a day thru the winter. They were mid range, but I tried stopping the D and I did seem to gradually get better thru the rest of Feb and all of March, so I thought it was all due to Vit D. Frequent urinating seemed to disappear as well during this time.
Got a stomach virus early April 2010 and the leg cramps came back strong. Any exercise made them even worse. Got slightly better within a month then another bout with the stomach in May and kept getting worse cramping at night, plus about this time period is when I noticed the constant muscle twitching in my lower legs.
Educated myself more on Lyme and decided I could still have it even though the ELISA was negative. Had someone recommend a good infectious disease doctor. Tried to get my GP doc to refer me. He said no, he wanted me to see a neurologist. I made an appointment with my GP doc and pleaded my case, and he did the referral to the ID doc.
ID doc saw me July 19, 2010. I furnished him a graph over time of all my symptoms (I'd been keeping a log) and their levels of intensity, and he wanted to scan me and test me and do $1000's of testing, which I balked and said lets just test what is most likely first. He did an about face and said how unreliable tests were and how many tick borne illnesses didn't even show up on tests, and suggested a month of Doxy 100mg twice a day, to see if I see any improvement. If not he wanted me to see a neurologist (he was concerned about possible ALS) and maybe get the CAT scan (check for tumors).
5 days after starting Doxy I also (on my own) started sublingual Vit B complex with lots of B12, and Magnesium (even tho my blood work said my Mag was fine), and the cramps stopped. Twitches remain. Achy legs if I do more than 15 min walking, remains. But no cramps and I sleep better at night.
I read more on Lyme and decided that the 30 days Doxy and the dose may not be enough, talked the ID doc into doing another 30 days of double the dose. He reluctantly said yes, and wanted to test at 3 weeks to make sure it wasn't hurting me. He thinks there's less than 10% chance I have Lyme. Wants me to see a neurologist and maybe get that CAT scan, etc.
I'm now almost to the end of the second 30 days of Doxy, and I too am not convinced I have Lyme, since I haven't had any improvement in my twitching. But I do give myself maybe a 50/50 chance I do have it, so I'd like to be tested, and still want to continue the Doxy. My ID doc did say he'd go as long as 2 months on the double dose of Doxy, but no more, as he didn't believe in open ended dosing.
I've read more on Lyme in the meantime, and I think I want to be tested using the Western Blot, and test for CD-57, but I read that one should be off abx for at least 2 wks before doing the W Blot.
Should I interrupt the abx to do the test? Or should I continue abx for another 30 days hoping the rest of the symptoms go away? Would interrupting for 2 weeks start a relapse?
I'm thinking if I'm negative on the W Blot I would go ahead and see the neurologist, maybe quit the abx altogether. I keep wondering if maybe the low back injury is the main problem and not an infection. It does feel like my low back aches more when my legs ache more.
If anyone has anything that would help in deciding what I should do, please let me know. I did post a separate topic asking for help locating a LLMD in my area.
Posts: 4 | From Oklahoma/Arkansas | Registered: Sep 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
Should I interrupt my Doxy for 2 weeks in order to get a W Blot done? Then restart the Doxy immediately while waiting for results? What about the CD-57 test, per burrascano that would tell if I'm at the point where I might sustain a recovery.
Posts: 4 | From Oklahoma/Arkansas | Registered: Sep 2010
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posted
IF it were ME... yes, I would stop the abx. If you had been bitten last month, I would say no.
But as it stands now, there is no rush. Going off for 2 wks will increase the likelihood of a positive WB.( and yes, just start it again afterward )
Be sure to get tested thru Igenex Lab. www.igenex.com You need test #188 and 189. Maybe your GP would sign off on it. You can order the test kit for free. You pay for it when you send in the blood.
CD57 is best done thru LabCorp.. but it is not essential in my opinion. If you can afford it, then do it.
The Igenex WB will cost around $200.
--moving this to Medical Questions where you will get more help--
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Hi and welcome rx4, You say the muscle twitching has not stopped. This can be a symptom of lyme or bartonella, another infection which requires different antibiotics. Cramping and the urge to urinate are also symptoms of bart.
It would be a good idea to travel the seven hours to see the LLMD so you receive the right treatment. I am traveling 2000 miles round trip to see a LLMD.
Regular doctors have no idea how to treat lyme and the co-infections even if they are willing to prescribe long term abx. You can end up not covering everything you have and just getting sicker.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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onbam
Unregistered
posted
You have Lyme, no doubt about it. Will PM.
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi rx4:
This can be a long road and while the doxy is good for Ehrlichiosis I'm not sure it will do much good at this point if you also have Bart and Lyme.
Below are some helpful reference links.
Not being a MD the rash's sound like Bart and Lyme but one should not rule out Babs.
We learned the hard way not to trust MD's, especially Infectious Disease MD's. You will need to be your own advocate.
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. 's Treatment Guidelines (2008) - 37 pages
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi rx4:
On the drugs and testing. My daughter was on 3 weeks amoxycillan and 3 weeks doxy with her 1st WB (Dr. J indicated meds didn't matter) and she's now been on 4.5 months of mepron and zithromax and just had it done again (need a couple more weeks for results).
So from our experience it didn't make sense to stop taking the meds b/4 blood work.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You can call Igenex and ask which they prefer.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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