posted
I went to Dr. G in NJ. Heard she was good. She was nice when I saw her and had the tests done. She did not call me back with the results but her secretary did which I though was not professional no matter how busy you are.
They came back Negative for the PCR but the Western Blot IgG.Alt (All Bands and not just CDC bands) came back Band 39 Equivocal.
Now this is confusing. I have muscle twitches, floaters which are getting worse, sore joints, sore muscles, memory problems and mood swings that I didn't have 4 months ago.
Does this mean I have or had Lyme? Should I see this doctor again or see another one. This doctor cost me $400 and my insurance didn't cover it.
At one point my Liver ALT was at 119 but then dropped below 50...I don't know what this means in my case.
I'm confused. Any help would be much appreciated.
Posts: 5 | From Carlstadt, NJ | Registered: May 2004
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Sue vG
Frequent Contributor (1K+ posts)
Member # 3143
posted
Welcome, Vargas911!
I just wanted to say hello and hope that the experienced folks from your neck of the woods will soon be along to help you.
posted
Thank you. At the onset my "cytokines"? were elevated as also my hemoglobin count. I also don't know what relevance this has to my situation. but I'm LOL at the medical industry at this point.
Posts: 5 | From Carlstadt, NJ | Registered: May 2004
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
equivicable means you have some positive bands for lyme...according to the cdc it may be negative, however, according to any good llmd, you do have lyme disease. don't trust lab results. your symtoms and some positive bands say you have lyme disease.
if your not happpy with your doc, and if she does not feel you should be treated then you need to find a real llmd who WILL treat you. plain and simple. Lyme is not something you should fool around with . It is not something you should stay with a doctor who doesn't know what they are doing, or who are experienting with you on.
It can get serious quickly. YOu are your own best advocate. Find a good llmd , take your blood work that you just had done to him. YOu paid for it, ask for a copy, they are required to give it to you by law. Then go and get started on some meds. It's a long slow process. Find someone you can trust adn the two of you will be a team to be reckoned with...
then come on here adn tell us how great your starting to feel!!
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
I saw the LLMD that is in ILADS and who was recommended by this forum. I'll keep all other comments to myself. But I personally am still ill. I posted to get some info on other lyme doctors in my area. Thanks.
Posts: 5 | From Carlstadt, NJ | Registered: May 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hi vargass,
My doctor's nurse or secretary is usually the one who gives me results, so I wouldn't count that against her.
Did you find out whether she will treat you with an equivical result? Many LLMDs will, with a clinical history that fits Lyme. Might be good to check that first.
Liver enzymes can transiently elevate for many reasons. Your doctor will probably want to keep an eye on them to see that they stay down.
Sorry you don't feel happy with your doctor. Lyme is a confusing illness, and there is a lot to cover in any appt. If this doctor had good recommendations, you might want to see whether a little more communication could help resolve things.
If not, then see if you can find another doctor. Even the most highly recommended doctor isn't right for everybody.
I'm new here, but I'm from NJ too. My doc does 10 consecutive PCR tests to rule out Lyme...(mine came back all negative)I had an IV line in before this and still felt ill so she continued testing ...my 13th test came back positive...if you feel ill...please...please keep hunting for an answer! Good Luck!
------------------
Posts: 56 | From Belvidere,NJ USA | Registered: May 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Vargas,
I just want to let you know a negative PCR means nothing. I once read, probably on this forum, that a PCR test is like looking for a needle in a haystack.
The PCR tests for the Lyme DNA. You basically need to have the spirochettes in the sample.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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MammaLyme
Frequent Contributor (1K+ posts)
Member # 1257
posted
Unless you go to www.bowen.org and print out the forms and take them to your doctor to draw your blood, you will not know what you have. This is the best lab around. I have been to all the other labs. MDL found nothing, BBI found babesia not lyme, PCR from Igenex found lyme, LUAT, two out of three positive for lyme, Quest band 41 only etc. This was in the year 2000. Then I found out about Bowen. I have been sending my blood to then ever since. They send colored pictures of what is in your blood. I had not only the lyme and babesia, but HGE and HME. No wonder I was so sick since 1994 when bitten. bowen is waiting for their patent but they are the best around. Posts: 2173 | From Maryland | Registered: Jun 2001
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posted
Were you also tested for a co-infection of mycoplasma fermentans? Your symptoms sound just like mine, and that's what I had (and I was also equivocal for Lyme, just like you). Make sure your LLMD tests you for this and other co-infections.
Posts: 16 | From Cambridge, MA | Registered: Mar 2004
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Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
Also read what Dr C of MO states as regards the reading of "equivocal." [same link]
------------------ oops! Lymetutu
[This message has been edited by Lymetoo (edited 04 May 2004).]
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hi Vargass, My doctor's nurse is usually the one who gives me results also, so I wouldn't be put off by that either. Different offices handle things differently, and many of our LLMD's are just plain swamped with patients.
Did she just decide not to treat you at all? Is that why you want a second opinion? Or are there other issues? You sound very symptomatic and indeed need to be treated.
The LLMD you saw has a really great reputation in this state, so it's surprising to hear you unhappy.
I posted to you under Seeking a Dr - we can't post names here, and your email address is not enabled for me to email you. Email me privately for more info on LLMD's in NJ.
------------------ Julie G. ___________ lymeinhell
Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Ok so I wont hold it against her. I deeply appologize. I'm just frusterated. It takes guts to be an LLMD and I commend the Dr for the effort in making many peoples lives easier to cope with. I would believe Dr G considered to be in Progressive Medicine and is a kind person. But, I can not afford another visit with her to discuss the options at this time. $400+ is too much for me and my NYC insurance is hell bent on seeing me die to avoid additional expenses. I was told I need to schedule an appointment to speak with her so...I'm on my own for now.
I'm thinking about ordering 100mg doxycycline and do this thing myself. Doxi is very cheap ($26 + s/h 30 cap PO b.i.t.) I just need to follow some protocols I have seen posted by the LLMD's. I'll be under GP care covered under insurance for now ($15 copay).
I'm also scheduled to see an eye doc now because my floaters are worse. My left eye is warped somehow and its like looking through seran wrap (this happened within a 2 week period).
Would you all consider this a wise idea given my current financial and SX situation? Should I buy the doxi and go this with my GP who is not a LLMD but understands the effects of doxi?
Posts: 5 | From Carlstadt, NJ | Registered: May 2004
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It might be a 1 1/2 hour ride, but the doc in Pburg, NJ might be a cheaper way to go. Don't know your financial situation, but they are out of network for me and the office is helping me fight the ins. co. They are great there. My "floaters" dissapeared after first being treated and so far haven't had them back...
Carol
Posts: 56 | From Belvidere,NJ USA | Registered: May 2004
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Sue vG
Frequent Contributor (1K+ posts)
Member # 3143
posted
Hey Buddy, there's nothing to apologize for. You can thank the AMA and the insurance companies for some LLMDs having to do business in a seemingly callous way.
If it were me, I would get the doxy any way I could. In fact that's what I did at first. Talked my GP into giving me either some doxy or cipro, can't remember, in case I had mycoplasma. Since he was thinking I had ALS at the time there seemed to be nothing to lose. I herxed like mad but since I wasn't considering the possibility of lyme, I thought the herx was other things.
As long as you need to, go for the lower stress options. If you do have lyme it won't kill you quickly. You'll have time to try things and see how they work for you.
Until you can get some abx or see your way clear to see an LLMD, here are some cost-effective ideas to help you move forward, or at least help you to cut your losses:
Samento (cat's claw)is an herb that some people here are using. A search should give you some introductory information. It's not particularly expensive. Take magnesium with B6 and B12. These are a couple of things that will help you in the meantime.
Also, some people say a low-carb diet helps, and moderate any alcohol intake. A lot of us twitch/tremor up a storm after drinking alcohol or eating a lot of sugar. No steroids. Don't overdo the exercise.
Above all, don't panic. It's not worth it. I know you're in a rough spot at the moment, but this too shall pass.
quote:Originally posted by Vargas911: I went to Dr. G in NJ. Heard she was good. She was nice when I saw her and had the tests done. She did not call me back with the results but her secretary did which I though was not professional no matter how busy you are.
They came back Negative for the PCR but the Western Blot IgG.Alt (All Bands and not just CDC bands) came back Band 39 Equivocal.
Now this is confusing. I have muscle twitches, floaters which are getting worse, sore joints, sore muscles, memory problems and mood swings that I didn't have 4 months ago.
Does this mean I have or had Lyme? Should I see this doctor again or see another one. This doctor cost me $400 and my insurance didn't cover it.
At one point my Liver ALT was at 119 but then dropped below 50...I don't know what this means in my case.
I'm confused. Any help would be much appreciated.
did the doc do a LUAT(lyme urine antigen test?) you shed the organism in your urine about 2 wks of abc tx. from what i understand, pcr does not always come back pos. if you have lyme. your dr. should dx and tx based on signs and symptoms even if test results are not clear cut. my luat, pcr and western blot were all pos. it was 1 1/2yrs. before i was dx and began tx. we have similar synptoms. Sounds like you have lyme based on this.
Posts: 40 | From Brandon, MS. USA | Registered: Dec 2003
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