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-   -   Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People... (https://www.healthboards.com/boards/lyme-disease/376544-llmds-too-expensive-i-feel-defeated-need-advice-you-wonderful-people.html)

Burnt Bees 03-23-2006 11:36 AM

Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People...
 
:confused: I just called an LLMD's office in my area and the cost of a consultation if $600! My heart almost dropped. I don't know what I am going to do...I feel like crying. I am only 19 and my family isn't supporting me and my persuing my symptoms. They feel that I have been tested for Lyme at Labcorp and it came up negative, so I don't have lyme. I don't want to let this go because if I do have lyme, it could be treated because it is in its early stages. Maybe I should just order the tests from IgeneX through my GP and see what happens. I read that lyme disease can hide from blood tests until the antibiotic is started, so if I get a false negative result from igeneX then what? I live with this? I have had tingling in the extremities, painful joint pain and a lot of creaking in fingers, ankles, wrists neck, jaw, and a blurry eye for 3 months, bad headaches too. now, that all started after vacationing in the catskills in upstate NY. I was perfectly fine before this trip. Then two weeks later, boom, I have blurred vision, the chills, night sweats and weakness, then the tingling and joint pain began and has yet to let up. I have been tested for lupus, MS, arthritis, hepatitis and am awaiting my diabetes bloodwork, so far negative results for all. With all these negative results my family is beginning to think more and more that this is in my head and I am losing my support system. I am very depressed. Could anyone lend me some advice?

Thank you,
Michelle

brid 03-23-2006 11:40 AM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People...
 
hi burnt b! so sorry for your situacion, i am older tahn you but same thing.. i am just using the saving i had for a down paymet for an apartment.. do you have a credit card? maybe you can get a friend to pay with credit card and you can pay him in aprts? or maybe you can pay the doctor in parts? you call call doctor cameron, he charges $375 and almmost no waiting list..you can start taking doxy , thats what ususally and llmd will say, to start with doxy.. but if you plan to get tested, is not good because taking abx can give you a negative result...hope all works out for you! good luck!!}

p.s just came down with an idea... go to your gp, get some blood for igenex, get the igg and igm for lyme,thats $195, tell igenex to save your blood cause you might need more testing..try to get blood tomorrow.. once your doctor have your blood, you can start the doxy..that way you would have save blood before taking abx, and then with your results and taking the doxy, depends on your results, you go to a llmd..actually thats how i did, sent blood to igenex, wait for my results, strted my doxy and went to the llmd, better to go see an llmd with results.. otherwise he will sent to to get tested and migh be more expensice plus you will have to see him again...
good luck!
hugs

dianneom 03-23-2006 12:13 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People...
 
Hi Burnt Bees and brid,

About 6 months ago I emailed Dr. Cameron to ask about insurance. At that time he was taking insurance. Has that changed?

Dianne

Smyle 03-23-2006 12:14 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People..
 
Hi Michelle:

I agree with Brid. If the test comes back positive then maybe you could get your Dr. to at least get you started on doxycycline. There are many llmd's in the northeast. Maybe the one nearest you doesn't accept insurance, but I am sure someone will come on with suggestions of others who do.

Frango

deejavu 03-23-2006 12:22 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People...
 
Hi again Michelle,

I just responded to your other post but I will say this: just get the initial testing done which will cost a total of $190.00. Then take it from there.

I also could not afford to see a LLMD as I was fighting to keep my house. As fate would have it, someone mentioned Dr. David Jernigan's book on this board and I was able to buy it from ******.

I could only afford to buy 1 of his products at that time and I honestly felt a difference after using that product (called Borrelogen which acts like an antibiotic and costs $48.00 for the bottle).

Little by little my financial situation improved so I was able to add more of Dr. J's medicines. Now I have been following the rest of his protocol besides adding some other supplements which are helping me.

As far as your family not understand, well, I could write a book about my family not understanding also. They kept telling me it was all in my mind and I was nuts. :rolleyes: My marriage broke up because of Lyme as I wasn't diagnosed and my ex also thought I was a mental case so I kicked him out.

Now that I have an official diagnosis, my ex treats me different so at least we do talk and even joke around like old times.

Most members here will tell you how their families do NOT support them or even want to understand this disease. To this day, I can not understand why.

My baby brother got cancer and my family (including myself) have been so supportive of him. So cancer is okay to support but lyme is not? Duh? What's wrong with the picture?

I guess my point is that Lyme is not on the news, you don't see commercials from doctors saying "have lyme? will treat!" You get the idea.

Lyme is a very serious disease and I truly believe it's just a matter of time when it hits the media big time.

The members on this board became my family, honest! They have helped me through the roughest times in my life. Without them, I don't know what I would have done.

This is a wonderful site with beautiful and supportive people.

You will do fine.

Hugs,
Denise

brid 03-23-2006 12:39 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People...
 
hi dieane, sorry, i dont know, my insurance is international, so the way it worked was that i pay him, then i take the receip to my insurance so they deduct $200 and got back from my insurance $175, you can call the secretary, she is very nice, good luck!

Burnt Bees 03-23-2006 01:05 PM

Re:Dr. Cameron
 
Thank you all for your kind and warm advice. I am so glad to have found these boards... I am just very overwelmed and it gets hard. But i am going to get set up with the testing at igeneX. Someone mentioned that Dr. Cameron might take insurace, I think he is in NY but does anyone know what city? I want to call information and get his number so I could speak with the secretary. Should I tell her i am getting tested through igenex and that i will make an appt. once the results are in, or just ask about insurance?

debill 03-23-2006 01:20 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People...
 
Hi Burnt,

Dr C is in Mt. Kisco. You can just search his name and all his info will come up. He does take some insurances but I don't know which ones. He didn't take mine and my appt. was 375.00 without having any blood drawn.

Do you have all of your old labs..the ones for lupus and other diseases. I took those with me to my first appt. and that help him decide what to do with me. You can explain your financial situation and maybe he won't even need to draw more blood on you. My results are from Igenex and they are not a truly positive result. They didn't matter to him because of my history. It's worth a shot.

He started me on abx that day and I don't have to go back for awhile. His waiting time is not long either.

I hope this helps...deb

Burnt Bees 03-23-2006 01:32 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People..
 
Thanks Deb,

Could you explain your history of symptoms to me? About your question of my labs, I only have my MRI films, CBC results, but i am seeing my rheumatologist on monday for the first time since I got tested for lupus , arthritis, lyme(through labcorp). do you think she could give me copies of those labs?

Thanks- michelle

Betterdaysforme 03-23-2006 03:39 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People...
 
Dear Michelle,

Not only can you get copies of your tests from your doctor but the law entitles you to them. I agree that maybe you should do the Igm and Igg thru Igenex ($190 or $195) and when you get your results go and see Dr. Cameron. Don't forget the tests may come back indeterminate but it is which bands show positive or Ind that tells the story, not the number of bands like the CDC says. :rolleyes: Maybe Moecasey will come on and tell you about him curing her mother. I know she said he takes insurance so maybe you will luck out and yours will be one he takes. After you get your results back from the bloodwork if they are positive then you will have some ammunition with your family. It's a shame I have to say that. In the meantime maybe you can explain your situation and age and can work something out with Dr. Cameron for payment. There is usually a 4 month or so period between appointments so maybe during those appointments you can make monthly payments. I will put you on my prayer list for this to happen. Good luck.

Maureen

Burnt Bees 03-23-2006 03:47 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People..
 
Thank you Maureen for your kind thoughts. I will get the tests through igenex as soon as possible. Obviously igenex will send me copies of my results... And if the IGG and IGM tests throught Igenex are negative, should I knock Lyme off my list of possibilities or see Dr. Cameron anyway? I hate to say this because I know how detrimental lyme has been to many people, but part of me hopes it is lyme because if not i think I am looking at the beginning stages of multiple sclerosis that haven't shown up yet on MRIs, and that is just the scariest thing. :eek:

Again, thanks to all for the support... i am so glad i could talk to real people who are experiencing life as I have been, my thoughts are with all of you to be well.

Michelle

Betterdaysforme 03-23-2006 04:46 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People...
 
Dear Michelle,

Get the testing done and then if it isn't positive come here and post your results. Actually post them anyway. We aren't doctors but can point you in the right direction. Like you said you don't want to ignore this. I just couldn't get an answer for years and now can barely get around.

Maureen

Burnt Bees 03-23-2006 05:23 PM

what igeneX test to order...
 
hello again. igeneX website makes it pretty easy to decide which kit to start with but I do have one question regarding this:

What Test(s) to Order

Based on our tracking, as well as input from our client physicians and our clinical consultant, the initial tests to order for Lyme disease are the IGeneX IgM and IgG Western Blot and PCRs. The Western Blots are used to determine if the patient is making antibodies. Since some patients do not make antibodies, the Lyme Serum PCR for DNA (# 453) or the Lyme Whole Blood PCR for DNA (# 456) is included in the initial panel.

Thus, the Initial Lyme Panel includes both Western Blots and your choice of PCR:

* Panel 5000:
#s 188, 189 & 453 (PCR—serum)
* Panel 5010:
#s188, 189 & 456 (PCR—whole blood)

now the way i interpret this is for $195 you get the western blot IgM and IgG plus either the PCR serum test or the PCR whole blood test, which test for DNA Should I choose the whole blood or the serum, i don't understand the difference. I hope someone could explain this to me!

Thanks,
Michelle

brid 03-23-2006 05:28 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People..
 
hi michelle. i rcomend you get tested and go and see him with the results, he will have a more clear frame of whats going on with you..i recomend you have blood tests for lupus, such as ana, a rbc, all the basic tets,bring you mri, cat scans reports, dont take the actual xrays because he wont see it, i took a full case of that and he just reads the reports..have your doctor made you inmune blood tets,hiv, sphylis , epstein bar, citomegaluvirus, he would like to see those kind of tests, so if yiu can have it done, you would defenitely will doing some saving,do also a liver enzymes, thats a very important one, he would like to see how is your liver in order to give you medication...and of course, you take your igenex test...have your igenex test as soon as posible since it takes like 10 bussiness days to have your results.. your doctor have to order it, and the results will be sent to your doctor... by the way, those pannels at igenex at $390, i really would recomend you to do the igm and igg, those are the ones $195 good luck!!serum blood is just regular blood, whole blood is without the clots.. if you are mailing the blood i recommend you serum, because of the travel, if you choose whole blood it may be ruined, but is actually the same... i will recommend you to wait for your results, i was like you, i knew i had something, so i was alrady thinking if lyme is negative which one will be the next one... tray to stay calm, if your tests show negative, you mught want to send urine sample, i spoke to doctor harris about what if my blood came out negative, so igenex sent me the unit kit just in case, i didnt have to do that tests thanks good, since my test showed indeterminte wich is consider positive, so dont worry...we are here to help you, we all know how you feel and you ar enot alone... good luck!
hugs
hugs

Burnt Bees 03-23-2006 05:34 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People..
 
i had blood tests already for lupus, hepititis, HIV, diabetes (waiting for this one, but doubt i have it), hepatitis, sjogrens, arthritis, CBC, urinalysis, all normal. plus i had an mri of the brain and cspine, both normal, CT scan of the brain - normal, CT scan of the neck - normal, eye exam and visual field test for blurred vision, i thought could be optic neuritis, but all was fine. i will order the igenex test asap, does my doctor literally have to call igenex to order it or can i order it and he just sign for it when the blood is sent...

brid 03-23-2006 07:03 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People..
 
hi burnt, you doctor have to order the test, he will have to fax the order and senn the blood, or you can have your blood send by a laboratory..
good luck

Egyptian EyEs 03-23-2006 09:51 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People..
 
Burt Bee,
I am a young female to. I also could not afford paying $500 everytime I went to the LLmd. I spent thousands in dollars and was on all kinds of medications. I really didn't see a benifit. My advice to you is that if you can not afford to see a doctor and get meds. Than you should try natural remedys/holistic healing. Read as much as you can about vitamins and nutrition. You should start by eating as healthy as you can. In this day and age we don't get anywhere near the amount of vitimans we should. You can read my post "I can help some people here" to understand more where I am coming from. Go to a health food store talk to the owners, go to different health food stores get there oppions. you can find so many things that will boost your immune system, clean toxins out of you ect. But its a life changeing commitment....and trust me it's all worth it!

I hope I can help. I want to devote my time to help ppl like you & me. I understand how you feel and there is a brighter day. Also there is (L-tyrosin) at the health food stores its an amino acid. Its a natural anti-deppressant. You can try to take that I love it!

Keep ya head up!!!

debill 03-23-2006 10:02 PM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People...
 
Hello burnt,

Dr. Harris told me over the phone which tests to have down and what color tubes to have it put in. My doctor then wrote a script out for them and I called around until I found a lab/hospital in my area that had drawn for Igenex before. I enclosed my payment in the box that the lab sent out. I didn't get a kit..so I assume the kit might be easier.

My sx's started 10 years ago this summer. I had a rash on my upper thighs that no one knew what it was followed by what I thought was the flu. Lyme disease never entered my mind. It should have since my now ex-husband worked in the woods and I was always picking ticks from him and his clothes. Next started the pins and needles in my face, left arm and leg. Then I entered the high anxiety/depression. Over the years I have had so many symptoms I know that I can't remember them all. Fatigue, burning and stabbing sensations, numbness, shortness of breath, chest pain, knee and hip pain, mental confusion, rashes, loss of hair, circulation problems, sensitive to the heat and cold, dizziness, vertigo, restless legs, twitching. I am sure there are more but right now I am going through a new one..insomnia..and I am mentally drained.

I was first dx'd with probable MS. All of my MRI's and spinal taps have been negative. Then I was told it was all in my head which made me go off the deep end. Now I have been told mixed connective tissue disease. Again, all my testing for that is negative. I have had many Sed rates, ANA's, anti-ro, anti-sm. anticardiolipin, sjorens, etc. My lyme test is indertminate but with several positves bands. I can't remember which bands right now.

Get copies off all your labs. Then make a copy of those and keep a set for yourself and a set for your LLMD.

You need to be aggressive to find an answer. Even if it ends up not being Lyme you have to be your own advocate. Don't depend on doctors to know all the answers. Research..Research and Research some more until your satisfied.

Good luck to you and stick around..this is a great place to be.

deb

peregrine 03-24-2006 03:39 AM

Re: Llmds Are Too Expensive, I Feel Defeated. Need Advice From You Wonderful People..
 
Are those figures correct for IGG and IGM at IgeneX? I had mine done about a month ago and it was $390!

Prema


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