Lyme Disease Community
Deperately Looking for LLMD
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Deperately Looking for LLMD

I live in rural Oklahoma and desperately need a LLMD. Contracted Lyme in early 2008 in NE Florida, one year later, lots of money down the drain, many docs later, misdiagnosed with stroke, ALS, etc., I was tested through IGENEX at my own urging, begging and was CDC diagnosed with Neuro Borelliosis and Mycoplasma. I lost my job, was thrown in jail for causing a wreck, running stop light, I swore was green, went Lyme rage on officer for telling me I had LIES Disease when I told him I was not slurring and lost and unable to perform field test because of LYME Disease. I went on the MarshalI Protocol for one year in 2009. It did improve some cognitive abilities, but I ran out of financial resources and had to move closer to familial support in Oklahoma. I was diagnosed with severe psychiatric problems, Bipolar, etc. even though I was in my early 40s and had never had prior problems. You can guess the usual Lyme story. I look fine, I am not fine. 4 years later, I am only getting worse. Three years now without treatment, denial, grief, fear, loss of relationships. My family is beginning to understand now because now I am having seizures. I have no resources left and I do not want to die. I will drive to another state, but I desperately need a good LLMD who will help me please. This Disease has ruined my life. I was a bright, competent, social, attractive executive. Now I am nothing. I am in complete survival mode. If anyone out there has any suggestions, I would greatly appreciate it. Thank you all for giving me stories to read so that I don't feel so isolated in this.life. The constant pain is unbearable and I am beyond exhausted both physically and mentally.
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Welcome to MedHelp -- so very sorry to hear about all you have been through and are still going through.

You don't say what part of OK you are in, but a quick google/search for

                            oklahoma lyme disease

brings up a huge number of links to check out.  Some of them are links to websites posts saying 'there is no Lyme disease in Oklahoma!', but every state has people who say that is absolutely true.  Just keep reading through the links to find the ones that acknowledge Lyme, and go from there.  

It looks like a group was meeting in Tulsa a couple of years ago, and they may still meet but just aren't keeping their website up to date.  Lyme is everywhere, and you will surely find people in OK who understand what you are going through and can point you toward some resources.

You may well have other infections the Lyme ticks brought along, and that complicates the diagnosis for docs who are not familiar with Lyme.  It just means keeping on looking for a doc who understands.  

If you can recruit someone among your family or friends who will help you search for a Lyme specialist, that will take some of the load off of you.  

Two things I would do:

1 -- search online for what I wrote above:  

                   oklahoma lyme disease

, skipping over the negative articles denying that Lyme is in OK, and look for groups that you can contact who can doubtless give you names of Lyme-wise MDs.

2 -- email to

                  contact [at] ILADS [dot] org

and tell them where you are specifically (which city/town in OK) and how far you can travel to see an LLMD.  ILADS is the main voluntary group for Lyme-aware MDs, and they have names of docs on their roster that they can give you.  I haven't used them myself, so I don't know exactly how it works.

[continued in next post]

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[continued from previous post]

3 -- Here's an idea:

               Dr Charles Crist
               Springfield MO

He is easy to find online.  He is well known in the Lyme field, but I don't personally know anyone who has been treated by him.  It looks like you are about 6 hours' drive from Springfield, but it might be worth it.

(I understand that Texas does not have a lot of Lyme docs, because the TX medical board doesn't 'believe' in Lyme, so you might do better to go northward.  I saw a blog by someone who went to Reno for treatment, but I don't know that you need to go that far.)  
----------------------------------------------------------------------

You say in your post:  "Now I am nothing. I am in complete survival mode."  I have to correct you:  you are NOT nothing, and you are strong enough to have through all this and you are still fighting to get well.  Being in survival mode is a good thing, and it shows how strong and determined you are.  

I do not know anyone personally who has done the Marshall treatment, and I don't really understand its scientific basis.  I would find a Lyme specialist who uses antibiotics rather than the Marshall approach (avoiding sun, etc).

Have someone help you do that google/search above, and then work your way through it gleaning names of docs and groups who deal with Lyme.  Sorry not to be of more help, and sending you all good wishes --

Please stay in touch!  We send you all good wishes --
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Thank you for such a quick reply. I have heard of Dr. Crist as well, as far as I know Oklahoma does not believe in Lyme either, so I am sure I will end up going to MO or elsewhere after I can get some more funds together. When I first became ill in 2008 I had many resources research wise at hand and learned of him and Garth, as well as Schaller in S Florida, and of course all of the ones in NJ, NY, etc. My time will come when I get a chance to see someone who can help, I know. It has just been a long and arduous road and it is so easy to live in denial until it once again becomes so intolerable that you can no longer ignore the obvious. I thank you for your understanding and your well wishes, One never knows that the smallest kindness can change an entire life of another. Thank you.
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Hi,
Just adding to what Jackie said. I lived in Texas when my Lyme went crazy, I had to leave the state to get treatment.

FYI, I am in FL and my good friend sees Schaller, he gave me free advice as a courtesy to her. He is very expensive and does not take insurance. Just so you are aware.

I have a great LLMD in Sarasota. I have heard the ones in NY and NJ might be well known but not so great according to them.

Wishing you luck.
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Oh forgot, according to Schaller who does say to take Dr Zhang's herbs in addition to abx, if herbals worked, everyone would be on them and cured.
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Ditto what mojo says about herbs ... they have a place in Lyme treatment under some approaches, but other docs stick with antibiotics alone.  There is much confusion in the medical community about Lyme, as you've encountered, and at this stage in understanding and coming to grips with Lyme and its coinfections, it's good (if confusing) to have a diversity of opinion and approaches.  It's a matter of finding a doc who makes sense to you and working with him/her.

I was treated by a Lyme doc who does only antibiotics and is not interested in vitamins at all.  It worked, but I also think vitamins and supplements are very helpful.  After I was treated (successfully), I found another doc to help me rebuild my health and stamina over all, and she was big on supplements and vitamins and a good diet.  It's a process ....
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