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pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 7/20/2009 10:44 AM (GMT -6)   
I've been away from this site for a few months because I think I was making myself crazy. Don't get me wrong......I appreciate all the advice I received and still very much appreciate all the advice that's given to anyone who posts here. For a newbie like me - seeing all the posts of all the different stages that people are in, makes me wonder what the best next step is.
 
I have been advised through this forum to seek out a LLMD, which I have yet to do. Mostly because I can't afford that and secondly, because I've read some bad stories and have had bad stroies emailed to me.
 
I am SO conflicted as to the status of my Lyme's. I was diagnosed in March, after being bit in November. I delayed treatment for 5 months and only went to the doctor after feeling really bad with the flu. I took Doxy from March to end of May and I get the impression from my primary that I should be cured. Trouble is....I feel like I'm still in a bad way with chronic back pain, shoulder pain and hip pain. Knee's seem to be intermittent, as is neck. I've gained weight because I can't exercise like I used to, due to the joint pain/back pain.
 
I'm wondering if I'm just feeling old because I'm 44 and I'm supposed to have joint pain or is this darn critter still alive and well. I feel as though my focus is completely flip-flopped. I can't seem to concentrate and retain things like I used to. Not sure if that has anything to do with anything.....but I know that i don't feel like me anymore.
 
Anybody know where I'm comin from?? I'm going to Ortho tomorrow because my shoulder pain is keeping me from shooting my bow. So basically....all the things I used to do to keep active- have gone to hell. Thoughts anyone?

pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 7/20/2009 10:55 AM (GMT -6)   
What about a follow-up blood test? Do people normally get a follow-up test after taking antibiotics or do primary's normally consider that enough?? Why do you suppose primary's are so reluctant to be agressive and provide care like LLMD's?

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 7/20/2009 11:14 AM (GMT -6)   
Pabowhunter,
You need to read all you can and become your own advocate!  Your doctor like most doctors believes what the IDSA says that Lyme is hard to catch and easy to cure.  It is not!  If I were you I would read Pam Weintraub's book Cure Unknown it explains so much of the how and why things are the way they are.  If you are scared to be on abx for longer you could check into herbal treatment.  I'm on the Buhner's protocol, you can read about it in his book Healing Lyme.  You can also asked to have a CD57 level drawn.   Did you have the joint pain like you have now before you were bit?  If you were fit and active and now you are not I would tend to believe it is the LD.  Just my 2 cents!  KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/20/2009 12:10 PM (GMT -6)   
Hi Pabowhunter

I can understand where you're coming from- until recently I couldn't afford an LLMD either. And I was also confused about Lyme- and didn't want to spend all that money unless I was sure it was the right thing.

From your post- it sounds like you are still having Lyme symptoms, but you are trying to convince yourself you don't, because that is what your doctor said. I would advise you to listen to your body and your instincts! You will know if something isn't right. Unfortunately, many Drs seem to treat by the book-instead of listening to patients. So, according to the IDSA, you should be cured- therefore your doctor says your are. But you know you aren't cured. This is really how ILADs started- the Dr,s who actually listened to their patients realized conventional Lyme treatments weren't working, and so they kept looking until they found something that did work. LLMD's do not just make stuff up- they have studies and research to back themselves up. That being said- it is hard to believe it when you first hear that the IDSA and most of the medical community could be so wrong...But the more research I did, the more I believed.

Out of curiosity- what did those bad stories say? I am just wondering because I was VERY skeptical for quite a while, but never once did I find a patient complaining about their LLMD. All I could find were people complaining about doctors who followed the IDSA guidelines.

pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 7/21/2009 9:40 AM (GMT -6)   
Nicky D,
I appreciate everything you have said and others who have responded with advice. I want to say this in a way that hopefully does not come across wrong, so don't take any of what I'm about to say personally.

I know that I need to be more of my own advocate and part of my problem is that, in working in healthcare, I'm far too trusting in thinking that any doc I see - really does have my best interest at heart. I believe that.....or used to. I am becoming more and more jaded with docs today. Now....I am getting more and more frustrated because I know that I don't feel well and don't feel like my former self and it seems like the only people who listen...is the group here on this board. My primary probably thinks that I have evolved into to some hypochondriac because i tell him I don't feel better and he doesn't know why. Case in point....just last night - he called to let me know that my recent blodd tests were back and that my Vit D is low and recommended that I take 1000 Vit D and recheck it in 2 months. he asked how I felt, to which I replied..not good and he suggested going to Rheum for my continuing joint pain. No re-check of Lymes....not even calling it Lymes anymore because "I took the Doxy" so I should be cured, right?

He was the main person telling me to avoid LLMD's as they will only prey on me for feeling so badly and have me waste time and money by making me follow-up frequently. Also urged me not to commiserate with folks here as it's easy for me to identify with you all because we're all in the same boat. Not sure if that was implying that we are "those kinds of patients" that feeds off one another's illness or not. There were a few others that told me that LLMD's are not easy to get into because of extended wait times and that the "Consult" is bad enough cost-wise, but subsequent vists rack up quickly.

Since I really don't have the funds to go to a LLMD.....is there any chance that a good ID doc can manage me? Does anyone have any good stories about ID docs being able to manage Lymes??

Bottom line is this......I feel bad and I'm trying to educate myself as much as I can, but it's all so overwhelming to me. The lingo, the protocols, EVERYTHING. I feel like I keep going round in circles, like a dog chasing his tail. Someone had commented on my focus/concentration problems in an earlier post and I had to laugh...wondering if dyslexia is a byproduct because for one reason or another...my typing (which wasn't great before) has turned abysmal, as I am constanly flip-flopping letters as I go.

Let me just say that I don't feel like I'm commiserating with you all......I wouldn't come here if i thought you all didn't offer some good. Seems to be more than my doc has been offering.

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 7/21/2009 2:16 PM (GMT -6)   
Pabowhunter,
If you haven't already, ask for copies of all your test results.  Do you know if the Vit D level that was drawn was a 25-Hydroxy?  That is the one you want to have done, from what I've read and heard the other is a waste of time.  You could ask your doctor to run a CD57 test, he will either not know what it is (like my GP who is lyme friendly), or he will tell you that you don't need the test because you don't have lyme "you are cured".  You could start treating yourself herbally while educating yourself and trying to form a game plan.  Cat's Claw is known to raise your CD57 score (it did mine).  I don't think doing nothing is really an option.   I would go to the library and see if they have "Cure Unknown" by Pam Weintraub & Healing Lyme by Stephen Buhner.  Healing Lyme has his protocol all spelled out along with other herbs for specific symptoms.  Good Luck, KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/21/2009 2:23 PM (GMT -6)   
pabowhunter, Hi and welcome to the board.

i can give you my story on IDs. i was tested for Lyme after i had a MRI that shows 10 to 15 lesions in my brain. my PCP sent me to a ID. he stated there is no Lyme here. then told me to rule out MS first. then if i didn't have MS and I thought i had lyme he would treat me for 30 days of IVs abx.

i went to a nuero ruled out MS. who also stated i showed positive for new infection of lyme by my test. went back to ID. who stated to my face he didn't think i had lyme and that my test was a false positive. this is my nightmare.

if you have the ability to go to a LLMD. it may be your best bet to get treated properly.


I wish you all the best.
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 7/21/2009 2:36 PM (GMT -6)   
Thanks KO and RottenDog (love that),

KO- my test was the 25-hydroxy. Does that have any significance as far as you know? I told my primary last night when we spoke that i wanted copies of all my labs. He is pushing for me to go to Rheum for work-up because he admittedly doesn't know what else to do for me. I went out to the IgeneX site today and pulled down the order form to have my own testing done. From the sounds of it - everyone here seems to be fairly consistent about getting checked for co-infections and more extensive lymes. There's nothing on the form about cost for these tests...but they are VERY clear that it's the patient responsibility, as they don't deal with insurance.

Rotten - I haven't sold myself on the idea of going the ID route.....just trying to find a work-around to avoid spending money I don't have to see a LLMD. I was cuious if folks have had good experiences with them. Doesn't sound like your's was a good one

Anyone willing to share how much it costs to get these different profiles done? I was going to call them tomorrow. My other question is....has anyone had their primary NOT sign off on the order form??

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/21/2009 2:56 PM (GMT -6)   
you may want to co your local heath dept. they gave me a list of all drs who have reported lyme in my area and i call each one but as of yet found one that will treat for lyme. as they do not understand the disease. there is only 1 Dr here working with a Dr in Boston to treat my neighbor but he doesn't take my ins.

as for my nic. i have rotties , spoiled rotten dogs..lol
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 7/21/2009 3:09 PM (GMT -6)   
I will add that I would avoid an ID Doc. I had the experience of being referred to one from my OB/Gyn who wanted my positive Lyme test followed up. He re-drew the Lyme Ab titer, it was again, high positive. Yet, he still refused to believe that I had Lyme. He said that I had symptoms for too long and that my IGM bands should have sero-converted by now. He told me to "Put Lyme out of your mind. You have Fibromyalgia." I personally feel that Fibro is a trash can diagnosis, so I sought out an LLMD. Thank goodness I did. Yes, I do have Lyme and am finally being treated. So as far as my 2 cents are worth, avoid the ID and if you possibly can, find a good LLMD around you. Best of luck to you.

Heather

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 7/21/2009 3:09 PM (GMT -6)   
PaBowhunter,
 I should start with a little background, I started having tingling in my fingers that got worse to the point that I went to see a Neuro.  She did a bunch of test including a EMG and CT, she wouldn't run a Lyme test because "I never had a bull's eye rash".  We camped and like the outdoors etc so I had plenty of exposure opportunities.  I didn't know very much about LD at the time, but it was one of the things that came up as a possibility when I searched on tingling extremeties.  My CT showed bulging disc which she said was causing the tingling in both hands and by that time also both feet.  She did the usual PT which didn't help and told me if it got worse I could come back.  Fast forward to 2007 the tingling was much worse and I was having joint pain and other issues.  While I was at my GP for my yearly Pap I mentioned about the tingling and what the Neuro had told me.  She was the one that told me that that couldn't be (tingling on both sides caused by the bulging disc).  She suggested that I have it checked out.  I went back to the Neuro because I thought it would be easier that starting all over with someone else ( and I wanted to tell her what my GP had said).  When I asked her about what my GP had said she finally admitted that it couldn't be from that.  So basically she lied to me.  She again ran all the test except the CT.  She did do another EMG (she does the test so that's $800 for her).  When I insisted she run a LD test she still didn't want to run one, but did.  I had made an appointment with a Rheumy in the mean time.  The day before my appt. I went to get copies of all my test to take to the Rheumy.  I noticed that the LD results were missing.  Her office had to call the lab and I had to wait 3hrs while they located my results.  When the secretary got the fax I knew she was going to say it was Positive and it was.  I only had 1/2 day to read up on LD, but I still knew more about it that the Rheumy.  He was very condescending and told me that it was a false positive!  He told me it couldn't be LD because if I had had it for 7 years I would be much sicker, I never camped in the Northeast (as if Lyme, CT is the only place you can get LD), and I never had a bull's eye rash!  He's the one that gave me the Doxy "Just in Case".  He wanted to do a Bone Scan, when I asked why he said and I quote "to rule out scary things", when I asked if he meant Cancer he said yes.  He had a med student/resident shadowing him that day and he was more interested in explaining my EMG results to him that talking to me!  He basically barked questions at me like "any problems with eyes, ears, nose".   It was a horrible experience, and I am still mad about it (if you couldn't tell).
Alot of people (even those that don't have LD have low Vit D , I had mine checked because of a show that Oprah did, and I'm low too.   The Igenex test are expensive, and your doctor will probably not want to you to have them run the test because they test for more bands (the CDC removed LD specific bands from the testing that is CDC approved), but I've been told that because you are going to pay out of pocket you could have your dentist sign the order form.  Hope this helps, KO  
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4282
   Posted 7/22/2009 6:38 AM (GMT -6)   
Hi pabowhunter,
 
I was in your shoes except that I didn't trust any doctor because they kept telling me I didn't have lyme when I knew I did.
 
I think the best thing you could do right now is read books, search the internet, and learn.
 
I am a strong believer in alternative medicine so I recommend "Healing Lyme" by Stephen Buhner and the protocol that made me better was from a book called "Beating Lyme Disease" by Dr. David Jernigan.
 
Both books are real eye openers and you can learn so much about this disease from these books.
 
Hope that helps,
Denise
 
 
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 7/22/2009 10:11 AM (GMT -6)   
All good stuff. I appreciate all the feedback from everyone.

Since I am more of the type that avoids medicine at all costs - I like the alternative medicine path. Aside from taking the Doxy recently, I seldom take medicine for anything. It's a very rare occurence for me to even take Tylenol, Advil or Aleve regardless of whatever pain I may be in. I've always been that way. After spending time in the miltary and being injected with all sorts of meds/vaccines that made me sick (yellow fever, plaque etc...) I vowed that I would never put that crap in my body willingly.....short of getting that cortisone shot yesterday in my shoulder.

I will try to track down some of these books that you all have mentioned. I have been reading lots on the web and on this forum, so I understand that knowledge is key here. I heard that the "Under our skin" show will be airing tonight around 8 or 9pm. I saw the trailer and it looks interesting. I'll DVR it, as I will be at a meeting this evening - but look forward to seeing it.

Thanks again to everyone for their words of wisdom. I do really appreciate it.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 7/22/2009 10:55 AM (GMT -6)   
We hear you and totally understand. It is too bad that you delayed your treatment. Really. too bad for you.
It is very confusing for sure..and madding as well.
You have choices and every will agrue about what is best.
There is a Dr. in Kansas who does herbal treatment. like 6,000 for 2 weeks. I have two buddies that I have sent there..and they think I am sort of saint now.
I went to Envita for a long time....and that worked for me...here is runs aroung 23,000 for 6 weeks now..but you have to move there.

LLMDS some people have been cured this way...though not many.
I could not afford mine. Nor did I want to live with a stint in my arm....I love to swim and take baths.
My LLMD told me my treatment would be for 18 mos...yes a year and a half, and would cost me 3,500 a week or more.
I choose not to do it that way.

I got put on cymbalta for fatique and terrible body pain and for the blues.
It made my life so much better and others and best...I was able to function and get out of bed...and take my kids to school.

You have to get on all of the Immune support asap. I listed them all. This is the most important thing to do. It will be your bodies defense for the bacteria that have had time to now...reproduce in your system.
:>)
Marie


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 7/22/2009 10:57 AM (GMT -6)   
Oh..and the cymbalta will take the weight off too.
You need to be able to function and be able to get out of bed..and be able to fight this lyme battle.
There is not a quick fix with a pill that is going to help your body defend itself from bacteria.
Get your body the best fuel and defense that you can. And it can fight this thing for you.


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/22/2009 1:18 PM (GMT -6)   
is the UOS showing on TV? if so what stashon is it going to be on and time? thank you
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 7/22/2009 1:27 PM (GMT -6)   
So sorry.....I mis-spoke. It's actually "Monsters inside me - Masters of disguise". I have Comcast and it's on tonight at 9pm on a channel labeled APL....not really sure what that stands for.

My bad.....

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/22/2009 1:32 PM (GMT -6)   
it stands for animal planet and i already have my DVR set to record all of them.

thank you for the reply
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 7/22/2009 1:43 PM (GMT -6)   
As I undersstand ...this show will focus on the parasites that infect/infest us, to which I will assume - will cover Lymes and possibly co-infections associated.

Regards
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