posted
My PCP told me that I've probably got Lyme. (After a WB)..... she told me about a Doc here in MO, Dr C. but I can't afford him.
I am reading everything I can on this site... for the newbies there is a TON of information... I can't possibly digest it all in a lifetime I don't think....
Please, if I can't afford a LLMD doc and my PCP is only going to treat me with 30 days of antibiotics, what would the next most important step be?
Is there something I can buy at a health food store that might help keep the buggers at bay??
Thanks all that respond Razzy
Posts: 12 | From Missouri | Registered: May 2006
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posted
Have you contacted a support group leader in MO to find out if there is another doc who can treat you longer?
Did your PCP explain why only 30 days? Perhaps they need to get a copy of Dr. B's 2005 treatment guidelines. Perhaps there is someone else that could consult with Dr. C in MO and would be covered by your insurance.
There is a Dr. B in KC but he is difficult to get into. I don't know if there is a difference in the price or what insurance he takes. Anyone?
It sounds as if you may need some financial support. There was a good post on coping with the financial burdens due to lyme and I will try to find it and post it here for your review.
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
It seems to me that referring you to Dr. C. and only being willing to treat for thirty days is a bit of a contradiction. Perhaps, the local support group can suggest a Lyme-friendly PCP. It's worked for me.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
Hi Razzy, Welcome to LymeNet. I know it doesn't help your situation but you're not alone. There are so many people who are unable to afford a LLMD.
So glad your PCP would even consider a diagnosis of Lyme disease. That puts you way ahead of a lot of people.
Since you say you can't afford Dr C, would your PCP consider calling him & maybe he'll advise her?
Another option - Print "Diagnostic Hints & Treatment Guidelines..." at www.ilads.org/burrascano_0905.html It's 33 pages of excellent info. Almost a Reader's Digest version of a medical book on Lyme written by one of the best LLMDs.
Print a copy for yourself. Highlight, underline, write in the margins..... whatever will make it easy for you to find helpful info again.
Ask your PCP if she would be willing to follow Dr B's Guidelines since you can't afford Dr C. If necessary, beg, plead, or shed a few tears if it'll help.
Key to success is starting treatment as early as possible & making sure the treatment is strong enough for a long enough time. If treatment is NOT adequate, the disease will simmer along & flare up again at any time.
Go to www.ilads.org On the left, click "Basic Info." Print both pages & hopefully your PCP will read them. Note #10 - problems with only 30 days treatment.
How serious are your symptoms? How long do you think you've had Lyme? Do you think your PCP would be willing to work with you on treatment?
Posts: 4638 | From South Carolina | Registered: Mar 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I would suggest you try to find another dr to treat you... one you can afford....
In my expereince of dealing with this disease (quite a while) not treating Lyme disease you end up paying a much bigger price than any llmd charges.
Like someone else suggested local support groups might be a good place to start.
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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posted
Ok, I know this is LONG but.... here's whats been going on with me. AND THANK YOU ALL for the infomation. I've printed off articles and wrote down information... thank you thank you thank you.
Starting April 2004
Three tick bites in three weeks. Tinnities starts toward the end of the month. (left ear only, very high pitched) 102-103 fever around the end of the month, sick for 3 days. (came on very quickly and left the same way) Irritability Saw a doc re: the high fever thinking it might be a UTI. That was neg. Asked about Lyme and West Nile diseases since I had had the tick bites ( and I know I was around mesquitos since we were living on the White River at the time). Was told there was no treatment so why test. Tired easily.
Sept 2004 Body achs and pains, arthritic like, worse in hands/thumb joints, knees. Freq headaches. Brain fog or what I called 'mental sluggishness". Very tired. We would go shopping, I would make it through one store and need to return home to rest ... some shopping days were better than others (good days were few and far between).
January 21st 2005 Headed out to work that morning but felt a pain in my abdomen. Thought I might be coming down with the flu. After sitting on the commode awhile and not having diarrhea I got up and went to the living room. Sat on the couch just briefly and in the next minute or two I all of a sudden became so tired (extremely fatigued) that I called my boss and told her I was heading to bed and would not be in to work. I went to bed and was asleep by 9am, I didnt wake up till between 10-11am the next day. By Sunday (Jan 23rd) I had developed a severe sinus infection. Going through 2 boxes of kleenex in 2 days. Went to MD on Tuesday morning, started on Amox for sinus inf. Talked to him about how tired I was feeling, explained that I was so tired I had no choice but to sleep. He didn't have any answers for the tiredness except it could be related somehow to just being sick with the sinus infection.
One Monday Jan 31st (nearly a week later) I went back to him because the Amox wasn't working, was put on Ketec which did help, but during this week I was very stiff and sore. I laid on one side for hours because the pain in my joints was so bad I didn't want to move. I would literally lay there for hours, not drinking, not going to the bathroom, not eating.
The following weekend I developed a UTI (went to urgent care). The fatigue cycled. On Fridays I was in bed. By Wed I would start feeling better, Thur I was up and doing some housework, feeling like I could return to work Friday. But then on Friday I was back in bed. This went on for FIVE weeks. Later part of FEB, I went to an other doc, internist who tested me for lymphoma (chest Xray), MRI was done of the abdomen, LOTS of blood work. He asked if I had been out of the country to African ( sleeping sickness). Or had been exposed to Malaria (the only disease he could think of that cycled as I described above). Thought I might have chronic fatigue or fibromyalgia
Also saw a Rheumatologist, first to see about possible arthritis diagnosis. He questioned whether or not I had Chronic Fatigue Syndrom. Later I saw him re: painful knees, mostly when going down stairs. He gave me a cortisone shot in right knee which really helped for about 3 months.
Summer 2005. Saw internist for brain fog, headaches (migraines) and fatigue/weakness. Was asked if i was feeling depressed and I wasn't. Was told even though I didnt feel depressed I probably was, these were all classic depressive symptoms and I was put first on zoloft then wellbutrin, I stopped them within 3 weeks.
More recently I've had painful achilles tendons. Occasionally I feel pain in my neck (under jaw) and notice a swollen lymph node. This doesn't usually last very long. My arms, neck and hands ache so bad sometimes I want to cry.
A rather odd sensation has been lightning like short/quick pains in the bottoms of my feet. It's brought me to tears more times than not. Numbness in the bottoms of my feet and toes with burning sensation. Insomnia which has lasted for 2 days. (take benadryl and melatonin but melatonin gave me nightmares) Dizziness, usually after I lie down (comes and goes rather quickly).
Other health issues: Hypertension since 1990-91, reflux (seemed at first like i could get heartburn by just drinking water) for about 5 years. Had Giardia approx 1980 which was resolved.
Take care everyone and God Bless. Razzy
Posts: 12 | From Missouri | Registered: May 2006
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Very good idea! and then start saving your money for Dr C. It would cost you around $450 the first visit and you wouldn't have to go back for at least 6 months. He's worth every penny if you want to get well.
Do you have insurance that would reimburse you for the visit? Mine does.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Have you considered taking herbs? There is a book by Steven Buhner on" Healing lyme." I don't have it, but I plan on getting it, I have heard it is excellent.
I am taking some very strong herbs specifically for lyme and co-infections. If you want info, let me know.
Also, JimBob, who posts here follows herbal routine from the book, you might want to PM him. I wish you luck.
Gael
Posts: 121 | From philadelphia | Registered: Feb 2006
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Go to the best LLMD that you think you " can't " afford!
Beleive me you'll save money in the long run.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Your description of symptoms & how the disease progressed throws a different light on the problem. I thought you were early in the disease & treatment would not be too complicated.
The tick bites were 2 yrs ago & your symptoms indicate you could have co-infections along with Lyme disease. You really can't afford NOT to get the best treatment available - ASAP.
If you had cancer, you'd probably find a way to get treatment.
Lymetoo has made a great suggestion. Try to work out a way to start treatment as soon as you can, but save for an appt with Dr C. You may have to wait a month or two, maybe three, for an appt, so call & get on his calendar. Ask them if they have a payment plan.
Getting the best treatment possible now will be the best money you ever spent in your life. From your experience the last 2 yrs, you can see that this disease does not clear up on its own. The longer you wait, the more complicated it gets.
Do you have any insurance?
Would family members lend you the money?
Most of us have things we don't use any more. Could you raise some funds with a yard sale?
I encourage you to do everything in your power to see a LLMD. You won't regret it.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
There is a Dr. B in KC but he is difficult to get into. I don't know if there is a difference in the price or what insurance he takes. Anyone?
I'm not sure if you have insurance or not, but I've been to DR B in KC and it cost me nothing. He accepts insurance, I have BC/BS and Medicare, and they both paid. He is difficult to get into though.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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I do have insurance (Cigna ) and Dr C is not in our netword, neither is Dr B in KC. They wouldn't pay of them a penny.
Saving of course is an option, but his price for 1st time patients is from $450 - $600. I would have to save the later and more if I wanted testing of any kind, you have to pay up from for everything.
Saving is an option of course, little at a time. I see PCP again in June, I'll ask if she'll talk to Dr C.
I will look into the herbs. Today I bought some digestive enzymes, and Carlson's liquid Omega 3 both cost me an arm and a leg. lol (but it's a start, have the acidophillus too that someone mentioned)
What infections are considered "CO-INFECTIONS", do you mean like strep or what? I just haven't got a good grasp on what those are yet. (Still reading posts though.)
HEATHER, I'm not exactly sure what you mean by your comment but if I can't afford it, I can't afford it. Please don't make me feel any worse than I already do about it. You don't understand my circumstances.
I appreciate everyones advice, your time to post and concerns.... God Bless
Razzy
Posts: 12 | From Missouri | Registered: May 2006
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I do have insurance (Cigna ) and Dr C is not in our netword, neither is Dr B in KC. They wouldn't pay of them a penny.
Saving of course is an option, but his price for 1st time patients is from $450 - $600. I would have to save the later and more if I wanted testing of any kind, you have to pay up from for everything.
Saving is an option of course, little at a time. I see PCP again in June, I'll ask if she'll talk to Dr C.
I will look into the herbs. Today I bought some digestive enzymes, and Carlson's liquid Omega 3 both cost me an arm and a leg. lol (but it's a start, have the acidophillus too that someone mentioned)
What infections are considered "CO-INFECTIONS", do you mean like strep or what? I just haven't got a good grasp on what those are yet. (Still reading posts though.)
HEATHER, I'm not exactly sure what you mean by your comment but if I can't afford it, I can't afford it. Please don't make me feel any worse than I already do about it. You don't understand my circumstances.
I appreciate everyones advice, your time to post and concerns.... God Bless
Razzy
Posts: 12 | From Missouri | Registered: May 2006
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I'm sorry your in this situation. I have a PPO and Medicare, and my PPO only paid $86 of a $1000 bill from my LLMD. I sure hope Medicare pays for more!!! I'm in the same boat as you, I really can't afford this. It's not that I don't think the doctors worth it, I do, I thought he was brilliant. I just don't know how I'm going to come up with this kind of money on a regular basis.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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quote:Originally posted by Raz: Thanks for the responses everyone.
I do have insurance (Cigna ) and Dr C is not in our netword, neither is Dr B in KC. They wouldn't pay of them a penny.
Saving of course is an option, but his price for 1st time patients is from $450 - $600. I would have to save the later and more if I wanted testing of any kind, you have to pay up from for everything.
Saving is an option of course, little at a time. I see PCP again in June, I'll ask if she'll talk to Dr C.
I will look into the herbs. Today I bought some digestive enzymes, and Carlson's liquid Omega 3 both cost me an arm and a leg. lol (but it's a start, have the acidophillus too that someone mentioned)
What infections are considered "CO-INFECTIONS", do you mean like strep or what? I just haven't got a good grasp on what those are yet. (Still reading posts though.)
HEATHER, I'm not exactly sure what you mean by your comment but if I can't afford it, I can't afford it. Please don't make me feel any worse than I already do about it. You don't understand my circumstances.
I appreciate everyones advice, your time to post and concerns.... God Bless
Razzy
Do you have out-of-network benefits?
You can put the cost of the visit on a credit card.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Just wanted to add one more coinfection to lymetoo's list
posted
I have NO credit cards at all.
Posts: 12 | From Missouri | Registered: May 2006
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geniveve
Unregistered
posted
raz, i understand about the money situation. my first visit at a lyme doc cost 400 for the igenex test and he charged another 450 on top of that. i almost died!!! he was out of network and my insurance only paid a teeny teeny portion. i had to charge it and believe you me, my husband was not happy about that.
things have been difficult with treatment, and now i think i'll have to go herbal. can't afford the antibiotics and they're causing more problems than they are fixing.
i'm going to buy buhler's book and see if that helps.
wish docs were just more accommodating of those who can't afford treatment......
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posted
There are alternative therapies, although if you haven't had Lyme long antibiotics would be the best.
Other therapies: 1. essential oils--see recent posts on this board 2. Salt/vitamin C protocol--go to www.lymephotos.com (I think or else .net) 3. Rife--go to google and type in yahoo lyme and rife group. You can buy a rife machine for under $500.
May God give you a speedy recovery. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10171 | From Illinois | Registered: Aug 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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liz28
Unregistered
posted
Doxycycline is one of the most widely prescribed acne medications and malaria preventatives in the world. Thousands of people take it on a daily basis.
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
hey, raz
I too understand the situation you're in. I was insured and tried to find an LLMD who was in-network.
I wasnt' successful and finally just decided to do whatever I could to get to an approved Lyme doctor, one like Dr. C in your state.
Honestly, raz, it's the best decision I have ever made. But we've had to sacrifice a lot to do this. I've gone through a lot of retirement savings. We've taken out a second mortgage on the house.
I went to friends and to family for help, too. That was maybe the hardest thing to do.
That first visit was in June, Raz. If you'd asked me then how I felt, I would have ranked my health at 18%. Now, 11 months later, I feel I'm at 65 to 70% and getting better all the time.
If your PCP is willing to learn about Lyme, that could be a viable option, too, as cbb and others have suggested. Maybe Dr. C would be willing to consult with her. Or you could print out Dr. B's guidelines and let her go by them
At least consider some of the alternatives some people have mentioned.
I hope you're able to get some help with this.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I agree try to find a dr. you can afford one you can make lyme literate....
There are a few out there (but not many) that are dumb but are willing to help and learn
I agree with Lymetoo if you will have to pay for your abx and u cant afford them - go to mexico and stock up.
Jay I think his id name is groovy or groovy2 has posts about this. He seems really nice I am sure he would give you the info of how to get meds in mexico if you pm him.
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