Seeing a Infectiou disease Dr. I'm hoping to get answers to questions I have.

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Ora
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Date Joined May 2010
Total Posts : 14
   Posted 5/18/2010 5:26 AM (GMT -7)   
I'm new on here and I have been going to a Neurologist for over a year who thinks I have MS. I had blood work right before my spinal tap and I had a positive come back on one out of three lyme tests. My neuro thinks it's a false positive. My PCP said he feels it's lyme and made an appointment for me at the ID clinic this Thursday. Is there such a thing as false positives and if so what would cause that? I've had several MRI's of my brain and I have spots on my brain. My spinal cord is damaged and I can't stand straight. All of my joints are very painful. I have been having trouble just walking for a few years now. Last year I had to get a walker just to get around. If it turns out that I do have Lyme disease will I get better after treatment or is the damage that has been caused to my body going to be permanent? Thanks, Ora

GWB
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Date Joined Jul 2005
Total Posts : 570
   Posted 5/18/2010 6:10 AM (GMT -7)   
Ora,

Welcome to the forum. Sorry to hear about your damaged spinal cord and painful joints. I have some comments to make but have a meeting to attend to in just a few minutes. When I get some time I'll respond to some of your questions. I'm sure others will be here soon to respond as well.

Ora, do you recall ever being bit by a tick? Did you ever have a bulls eye rash anywhere on your body? That would be helpful to know before answering your questions. Of course, not everyone knows if they've been bitten by a tick but still get Lyme disease.

I'll be back later on to share some thoughts with you and answer your questions.

Gary

Gretchen1
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Date Joined Jan 2007
Total Posts : 3550
   Posted 5/18/2010 6:22 AM (GMT -7)   
Joint pain is not usual with MS.  If I were you, I would agressively treat that Lyme disease first.  I can't imagine how a false positive works!  False negatives are very common but false positives?  Good luck.  You have found a wonderful and supportive board. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Ora
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Date Joined May 2010
Total Posts : 14
   Posted 5/18/2010 7:49 AM (GMT -7)   
Gretchen, Thank you for answering so quickly. I will do all I can about The Lyme disease if I do have it.

Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 5/18/2010 3:12 PM (GMT -7)   
If I were you, I'd be looking for a Lyme-Literate MD. Most regular ID doctors are not Lyme-Literate. Check out http://www.ilads.org/ and you can email the Turn the Corner Foundation (see http://www.turnthecorner.org/ ) for physician referrals. In my very humble opinion, it is very unlikely the positive Lyme test is a "false" positive.

Also it is difficult to say whether the damage to your spinal cord is repairable with appropriate Lyme treatment - some do get completely better; the body human has an amazing capacity to heal itself if given the tools & materials it needs to do so...don't give up hope :)

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 5/18/2010 5:31 PM (GMT -7)   
I tested positive for Lyme 8 times but was always told it was a False Positive. I am Dxed with MS and Nuero Lyme from an LLMD. I did very well on IV antibiotics and showed almost complete improvement, even the lesions on my MRI healed. I stayed on low dose antibiotics for 2 more years and when I stopped boom it was back 13 new lesions in different spots were back and this time my symptoms worse.
 
 I went back and saw my Nuero LLMD in CT a 3000 mile trip for me and he recommended we now treat MS, Lyme and CPN. So I am now on antibiotics and Copaxone an injectable MS medication. I feel like I am covering all my bases. There was recently a very small study only 30 people that used Minocycline with Copaxone for MS and the results were good. They are now working on 4 larger studies. I hope they are succsesful because I feel it works with me but can not find a Nuero who agrres with me localy. My MS Specialist knows I take antibiotics and does not feel it is necessary but is supportive of my choices.
 
It has been a very hard road for me going on 6 years of trying to figure out what to believe. I hope you get a Dr you can trust and feel confident one what is going on. I personally have had no luck with Infectious Disease Drs where I live they look at my 8 positive tests and they that it can't be right we don't even have Lyme here. It's funny to me that Dogs in my State test positive and are treated properly Vets even believe in Chronic Lyme. I am on the CDC statistics for my State after 3 positive tests they called me and talked for over an hour they wanted to try to figure out the location where I got Lyme. it shocked me because at that time i still believed my Drs that My tests were false she then called my first Nuero and asked him if he needed information on how to treat Lyme that is how I got my first 3 weeks of antibiotics and could tell they were working and got my butt on a plane to CT to get more. Best thing I ever did!
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


Ora
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/19/2010 7:47 AM (GMT -7)   
Do you think if I ask the infectious disease Dr when I go that he will send me to an LLMD or will I have to get a referral from my PCP. I'm so confused by all of this. Not knowing if I have MS or Lyme. My Neuro said even though he feels I have MS he can't treat me for it until I find out if I have LD or not. If I'm understand all of this it sounds like it could take a long time to get a diagnosis of any kind. It's hard waiting. The pain I have is getting worse all the time. I can hardly sleep. I get dizzy and have tingling and numbness in my body. How long does it normally take to get diagnosed? I take hydrocodone and gabapentin that my Neuro prescribed. I take b12 shots and 50,000 IU of vitamin D. I am deficient in both of them. Thanks for any information you can give me.

Traveler
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Date Joined May 2007
Total Posts : 35859
   Posted 5/19/2010 10:54 AM (GMT -7)   
HI Ora,
Welcome to our forum!! I'm sorry you are feeling so poorly. One of the best things you can do is to read, read, read!! I believe most here will agree that we have to be our own health advocate.There is some really great, information packed posts in the thread "New to Lyme? Start here".

Personally, I don't believe that there is such a critter as a "False Positive" with a tick-borne illness (TBI) - it would be like being only "a little bit" pregnant - you either are or you are not. If a person has enough of the anti-body to test positive, then you have enough to be ill. I also believe that just because a person tests negative, it doesn't necessarily mean that the person isn't infected with a tick-born illness because the infection can leave the blood & essentially hide in the tissues. There is plenty of evidence (I'm a living one!) that the illnesses can stay 'under the radar' for extended periods of time, only surfacing when the body decides it is under too much stress.

Not remembering a tick bite is not a big deal, as a tick in the nymph stage is no bigger then the period at the end of this sentence. And, once a person understands this, it becomes much easier to understand that a person can have a tick attach, feed & then drop off without even being noticed - especially if the tick attaches on the scalp.

There's even new studies coming out that it's not only the "hard-bodied" tick, but also the soft-bodied ticks that carry disease.

Of course this all is just my own opinion, I am not a medically educated, I have just done a lot of reading.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/19/2010 12:52 PM (GMT -7)   
Ora,

No, an Infectious Disease doctor will not send you to a LLMD. Very few ID doctors are actually willing to acknowledge long-term/chronic Lyme (i.e., very few are Lyme-Literate). You can get referrals to LLMD's through the ILADS website or through the Turn the Corner Foundation - http://ilads.org/ and http://turnthecorner.org - or you can post your location here and see if anyone knows of a good LLMD nearby.

Be aware also that most LLMD's do not take insurance because of the witch hunt against them that insurance coverage can increase their exposure to. Also, many insurance companies are not willing to pay for extended treatment for Lyme. And then there are a few lucky ones such as myself who has been able to get in with a LL Naturopath who is covered on my insurance, and all my treatment thus far has also been covered on my insurance ---but this is because of my other diagnoses I think (immune deficiency, etc.).

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


Ora
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/20/2010 6:02 AM (GMT -7)   
Thank you for the information. I had no idea that most insurance doesn't cover seeing an LLMD. In rough numbers what do you think it would cost me so see one? If it's very expensive I don't know if I can afford it. I'm wondering if I see one initially then see my PCP could he take over and treat me for it? Thank you for all your help.

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 5/20/2010 6:38 AM (GMT -7)   
Ora,

My initial visit to the LLMD (2-hour consultation) cost $540 and my insurance reimbursed me $140. The regular monthly visits run $175. My medications have been covered 100% by insurance so far. Some of the $1400 in initial lab work was not covered by insurance.

I think LLMD's are the only doctors knowledgeable enough and willing to treat with long term antibiotics. I'm more comfortable seeing a doctor who has treated thousands of Lyme patients. The treatment that I received from my Infectous Disease doctor was strictly limited to the CDC-guidelines and did not cure me.

By the way, my lumbar puncture indicated possible MS, so I still see the Neuro and have periodic MRI's to check for lesions.

Do you know of a good LLMD in your area?
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


Ora
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/20/2010 7:14 AM (GMT -7)   
I don't know of a good LLMD here. My PCP is who referred me to the Infectious disease clinic. I tried to look online to see if there was a LLMD here but had no luck. I'm not sure if I am going about it the right way. Like you I also have a neurologist who has sent me for a spinal tap and several MRI's thinks I have MS. I think that's why I am so confused about the whole thing. Both of my doctors have different opinions on what they think I have. I think I mentioned earlier that I did test positive for Lyme in the blood work before my spinal tap. about the costs, are they willing to let you make payments or does everything have to be paid upfront that isn't covered by insurance?

Ora
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/20/2010 7:42 AM (GMT -7)   
I Did contact the ILADS website and I'm hoping they will be able to find a LLMD in my area.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 5/20/2010 8:00 AM (GMT -7)   
There are several Lyme sites that will assist in finding LLMD's.
I can only remember a couple of them(Lyme-brain!), but if you were to do a search for Lyme sites & check them out I'm sure you will find more.

The two I can remember are Turn The Corner, and Canlyme.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Ora
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/20/2010 8:05 AM (GMT -7)   
Thank you for the information. I just received a message from the ILADS there isn't one in my city but I told them I am willing to travel.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 5/20/2010 8:13 AM (GMT -7)   
Ora,

I apologize for not getting back to you. Please click my email icon and send me an email and I will give you links to places where you can get LLMD referrals. You really do need to see an LLMD as that's the only way you're going to know if you have Lyme disease or not.

That "false positive" comment from your neuro is laughable, but quite typical of doctors who have no clue about this disease, that includes most Infectious Disease doctors too, sad to say.

I'll wait for your email then will promptly send you the links for finding an LLMD in your area or as close to you as possible. Let me know where you are too.

Thanks!

Gary

Ora
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/20/2010 8:21 AM (GMT -7)   
Gary, The ILADS just sent me an email. I am in Illinois. They say there is one in Elgin IL. and one in Iowa. I guess those are the closest to me.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 5/20/2010 8:31 AM (GMT -7)   
Ora,

That wasn't the website I was going to refer you to. There's two other websites other than ILADS that you can get LLMD (ILADS members) referrals from, but it's best I don't post it here in the open. If you'd rather not email me for privacy reasons no problem. I hope you find a good LLMD somewhere near you and soon.

Gary

Ora
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/20/2010 10:06 AM (GMT -7)   
Gary,
I tried to email you through your regular email and both my emails came back to me.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 5/20/2010 10:08 AM (GMT -7)   
Ora,

I got your email. Will respond when I get back from a meeting in couple of hours. Strange you got them back because I did get it.

Gary

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 5/20/2010 10:22 AM (GMT -7)   
Ora,
My doctor wants the money up front but, I would imagine that they probably offer payment terms when requested.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


Ora
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/20/2010 10:47 AM (GMT -7)   
If they have me pay upfront then I will do that but maybe I'll get lucky and they will arrange payments for me.

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 5/20/2010 11:22 AM (GMT -7)   
Please let us know how things go at the ID clinic.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


Ora
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/25/2010 4:37 AM (GMT -7)   
I saw the infectious disease doctor and was told that I had a false positive for Lyme from him. He went by the test I had run before my spinal tap and didn't run any tests of his own. He said if you have any kind of infection or bacteria in your body you will test positive in the screening. Then they do a second test the western block and he said I tested negative. That's the reason he said I have a false positive. Has anyone been told this before? He said it is more likely I have MS. He ask all of my symptoms and said they aren't consistent with LYME. I thought the symptoms for Lyme were the same as MS. I'm still as confused as ever.

Post Edited (Ora) : 5/25/2010 5:47:44 AM (GMT-6)


springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 5/25/2010 5:13 AM (GMT -7)   
Do not listen to them. It is your body. Continue to research on your own and if you have any doubt, keep searching. I listened to dr. after dr. for four years and it got me sicker and sicker. I now know that if I want to get well, I have to be the one calling the shots. I have lyme but have never tested CDC positive. I too have been told MS and denied coverage by insurance for lyme treatment. It is very hard to believe that there is a disease that really smart educated doctors know nothing about, BUT BELIEVE IT. Trust your instincts.
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