Lyme Hospital vs. LLMD

[michelew]

Hello, Everyone. I'm very new to this lyme thing, so I'm feeling extremely overwhelmed and confused. What I do know is the fact that my two sons, who have been experiencing neurological problems for many years, just recently tested negative for Lyme, or so the Quest Labs report indicated.

 

From what I understand, Quest is not very accurate, and since my sons were both reactive for bands 23 & 41, I'm now feeling, that based on their symptoms, they probably do have lyme. We have gone to North Carolina in the mountains every summer since they were very young, & they both have had ticks on them on many occasions.

 

In addition, they both have tested positive for Mycoplasma Pneuomonia, which I have also learned is a very common co-infection with Lyme.

 

I'm feeling very desperate, as my 12 year old son has been experiencing EXTREME neuropsychiatric symptoms for over a year. We first thought he had PITAND, because of the Myco P infection, but we've been treating the Myco with fairly high dose antibiotics for over 6 months, and are not seeing any improvement. This is what is making me think we're dealing with something else.

 

In addition to the psychiatric issues, an MRI revealed white matter lesions on his brain & an eye exam revealed optic neuritis (enlarged optic nerve). None of the doctors had an explanation for these abnormalities, but simply said that maybe he was just born with these conditions. I have since learned that these two symptoms are also very indicative of neuroborreliosis (Neuro Lyme).

 

Unfortunately, I live in the state of Florida, and there are only about two doctors in the entire state that are LLMD's, and they do not typically treat children. My husband said that he just wants to take our sons to a hospital and get them treated for Lyme, now that we're both convinced this is what they have.

 

I told my husband that I did not think that the mainstream hospitals and/or infectious disease doctors are capable of treating Lyme properly. Am I correct in this assumption, or are there some hospitals known for treating late stage lyme accurately?

 

I thought that I remembered reading that there are two different philosophies when treating Lyme & that the LLMD's are the ones who treat more aggresively and longer term? Am I right?

 

Any input would be greatly appreciated!

 

Michele

[LNN]

There are two "schools" on lyme. One group follows treatment guidelines published by IDSA (Infectious Diseases Society of America). IDSA says treat only with one month of one abx and only if telltale signs of lyme are present (bullseye rash, CDC positive western blot etc). They do not believe in "chronic lyme". They have been investigated by the CT Atty General for conflict of interest. Unfortunately, most mainstream medicine follows these guidelines and you'll find it nearly impossible to find anyone in Florida who believes lyme would be a problem for you - especially in a hospital or ER setting.

 

On the other side of the debate you have ILADS (Intl Lyme and Associated Diseases Society) which feels chronic lyme is very real and needs to be treated with a combination of therapies for a very long time. They support the idea that lyme can be contracted in any state in the country.

 

You aren't going to change minds. Your best bet is to get with a doctor who follows ILADS guidelines. If it were me, I'd do three things:

1. Contact ILADS and ask them for referrals to doctors in your part of the country (be prepared to travel)

2. Go to www.lymenet.org to the "seeking doctors" section and ask for referrals from members

3. Make an appt with an LLMD and ask them to order this test: http://www.advanced-lab.com/spirochete.php It's pricey ($500+?) but you will never have to doubt yourself if it's positive. Or perhaps the LLMD will treat without the test and just based on clinical evidence.

 

IMO, a hospital isn't going to be helpful.

[NancyD]

I agree 100% with everything Laura just said.

[MichaelTampa]

As they said, no regular hospital is going to be of any help for your situation. If you're near the Tampa area, you might PM me, I could send some suggestions your way. If you tell me what docs you've already researched won't handle kids, that'll help, as that is something I don't know, then I won't waste any time describing those docs to you.

[tpotter]

As they said, no regular hospital is going to be of any help for your situation. If you're near the Tampa area, you might PM me, I could send some suggestions your way. If you tell me what docs you've already researched won't handle kids, that'll help, as that is something I don't know, then I won't waste any time describing those docs to you.

 

 

I will add to that. As LLM said, be prepared to travel, but keep in mind that some of the LLMD's will do followup visits by telephone. That's what I do, and it is way less time consuming, and costs considerably less.

 

If you want a recommendation, you can PM me, but we go to MD.

 

FYI, it is NOT cheap, and be prepared for this to take a long time to treat. I also have mycoplasma pneum, and it is my only real symptom of LD. My entire family has LD or co-infections, and DH is the only one who is actually tested CDC positive (but we are certain with everyone else for multiple reasons.) We have been getting treated for 1 1/2 years now, and I am just now starting to feel better. Also, BTW, many of us on the forum have also gone with alternative medicine in addition to an LLMD (we currently are getting treating with antibiotic cocktails from the LLMD, and DS16 and I see a chiropractor regularly, take supplements determined by using muscle testing, and for the past 2 months, we have also been seeing an accupuncturist. For us, I feel like it has all helped.