So my doctor has basically given up on me. My last visit, he told me that he did not realize how sick I was when I first met him. He thought that we would just kick some borrelia butt, and move on. However, I did not get better, but worse with treatment. It has been one year.
He referred me to a Naturopath about four months ago, and I started a detox program. However, each time I see her it is costing over $1K per visit and I just can't afford her anymore. She also wants to use the Cowden protocol on me and says that the whole cost is $3K.
My LLMD referred me to another doctor close to my home, however in speaking with a few people, one thinks he is a total quack. He doesn't have a license and uses very controversial treatment. I feel a bit uneasy about going to see him.
Anyway, I need to get better and it seems that it is never going to happen. If anyone has any good advice, I would very much like to hear. Thanks!!
Posted by tailz (Member # 10014) on :
Have you looked into the possibility that artificial electromagnetic fields are your problem? - perhaps 'signaling' these bugs to replicate out of control? That's my problem. And there is no antibiotic that will ever work longterm under those conditions.
I would stop most of the herbs - herbs made me sicker after a while. I only take quinine powder now.
Then I would research your exposure to electromagnetic fields, starting with www.antennasearch.com.
I have found this to be the primary cause of my Lyme symptoms, and I measured the fields with a Trimeter around my home to prove to people that I really can feel EMFs.
Posted by radfaraf (Member # 11909) on :
If you want to try the Cowden protocol there is lots of information about it online so you would be able to try it on your own. The $3k cost if for 6 months so that is $500 a month which doesn't sound as bad. I've never tried this protocol myself so I can't really tell you if I think it is worth it or not.
Posted by beach4so (Member # 3832) on :
twopuggles
My kids and I see Dr. C and we have been on treatment for around 5 years. My oldest was the worst off and did every antibotic out there for at least 3 to 6 months. He did have his times of getting worse that first year but after a year he was starting to get better.
It might help if you notice are all of your symptoms getting worse or have some actually gotten better and you noticing new symptoms? We have done this for 3 years with Dom, new symptoms coming out.
He has been on amino acids for 2 years now (he is only 11). My two youngest 5 & 7 have started aminos since July and are doing wonderful.
I really think you need to find what works for you, seems for my family the comb's of antiboic and amnio acids have really helped.
Dom is off all antibotics and only the 5 year old still takes flagyl. I am allergic to most antibotics but the amino's and herbs have really helped me.
As for the price. Even Dr. C's amino acids are not that expensive. We would spend about 200 to 300 and that would last around 2 to 3 months depending on how many you took ect per the protocol.
I agree with Cave what about another llmd?
Starr
Posted by Skyler (Member # 11549) on :
hang in there babe. I am in the same position as you right now. My doctor is giving up. Does not know how to treat someone who has had this as long as i have.
Just hang in there. We will get better. We just have to move on, count our blessings that we know what is infact wrong with us and find a good doctor. and REMEMBER we will get better.
** and I am curious, do you own 2 pugs or puggles??? I have this silly theory that pugs and puggles are the source of all happieness. And when they sneeze they are showering the world in love... lol, They make me very happy (if you can't tell) And I am a big dork. Posted by David95928 (Member # 3521) on :
Two puggles, You are in my neighborhood. PM me if you want to know about my doctor. Dave
Posted by sometimesdilly (Member # 9982) on :
hi-
imo, no reputable LLMD would give up on you after one year. mine told me as a rule of thumb, it takes one year of tx for every year you've had Lyme.
you need a Lyme-literate doctor, one who is willing to fight with you, for you.
please don't give up on antibiotic treatment. sounds like you've been very sick for a long while. its going to take awhile to get better.
dilly
Posted by cantgiveupyet (Member # 8165) on :
hang in there,
what are your symptoms? what abx have you tried, did you treat for babesia.
My first LLMD gave up on me too. I cried that day at his office, but looking back it was a very good thing. Next dr found my hypothyroid and i went from 89lbs to 100lbs in a few months.
I was very very sick, LLMD called it a very fast mover. I had every symptom on the lyme list at once. yes all at one time!!! Im almost positive i almost died.
Just keep searching, im still searching for a dr to figure out my remaining symptoms.
After a few visits if the dr seems baffled move on!!
Posted by trueblue (Member # 7348) on :
quote:Originally posted by twopuggles: My LLMD referred me to another doctor close to my home, however in speaking with a few people, one thinks he is a total quack.
What do the others think?
I'd be tempted to find out all I could and make the best informed decision possible. Google stuff and the types of tx you think they might be using.
I am at a similar crossroads. I'm ready to take a leap of faith.
Posted by johnlyme1 (Member # 7343) on :
Has your LLMD also sent others to this doc, the one that you are questioning. If he has, find out why and see if you can find any of those who went to this other doc. If your LLMD has a good reputation, there might be something with what he is advising. My own LLMD has sent me to other people that have different approaches and I was the better for it.
There are a lot of inteeresting things going on out in the grass valley area.
Posted by twopuggles (Member # 10971) on :
Thanks all!! I truly appreciate the advice....
Yes, Skyler I have two puggles. They are a cross between a pug and a beagle, and don't have the smooshed face. They are too cute....and have great personalities. Very loyal and playful.
Anyway, I apparently have a lot of detox issues. My ND tells me that my body is having a problem eliminating toxins and she is trying to get me to that point with a hoard of pills. I have hormone issues, thyroid issues, food allergy issues, heavy metal issues....the list goes on. I am a walking mess. I have muscle and joint pain, stomach inflammation and IBS, back and neck pain, sleep problems, tingling in my shoulderblades, swollen glands. I'm sure there are a few more I forgot.
The cost is just getting out of control, and per my ND I still need to get my mercury fillings replaced. I think I am becoming more neurotic over my finances.
I am down to 96 pounds since all I can eat is brown rice, meat, and vegetables. I know there are a lot of others out there going through the same thing.
I am still on abx. I take Zithro, and my the last time I went to my LLMD he wanted to add Augmentin too. I am waiting a little to get it because it is $165.
I probably should use JohnLyme1's advice and contact some of the patients of the referral doc, and also contact David95928 to get some info on his doc too.
Thanks again!!! I wish everyone health and happiness......TP
Posted by Aniek (Member # 5374) on :
Is there a support group in your area? Nothing beats talking to others in person who are in similar situations. Especially when looking for a doctor.
Posted by Soleilpie (Member # 8481) on :
quote:Originally posted by twopuggles:
My LLMD referred me to another doctor close to my home, however in speaking with a few people, one thinks he is a total quack. He doesn't have a license and uses very controversial treatment.
If this doctor that your LLMD is referring you to doesn't have a license, then why is he practicing? Did he once have a license and then lost it or did he never had one? Is he even a physician?
If he doesn't have a license and others have told you he's a quack, then I'd stay away from him. There are good LLMDs out there, so don't waste your time on someone who doesn't have a proven record. Afterall, it's your life.
Wow, $1k for a naturopath! And I thought physicians were expensive. Is this normal?
[ 02. October 2007, 04:22 PM: Message edited by: Soleilpie ]
Posted by timaca (Member # 6911) on :
Your swollen glands (and other symptoms) makes me think of a possible viral connection. Please read the following link and ask your doctor to check you for viruses.
So, the doctor I was going to see nearby lost his license due to a fraud case. Anyway, he responded to the allegations as follows:
I believe I was a target of a conspiracy by the "Medical Establishment" because I wrote the first precedent-setting Law in US history (Arizona's homeopathic licensing law) that broke the Medical Establishment's monopoly. Normally, when a procedure is not covered by insurance, the company just asks for a rebate. In my case, an insurance company complained to both the medical board and the federal government.
What was the Government's motive and how much did it cost the United States taxpayers to go after me? As one criminal attorney said, 117 counts totaling $3,500 is "overkill" and is usually used only when they going after mobsters or big drug dealers.. I pled guilty to 4 counts totaling $145 worth of offenses. I did this because I was threatened with jail time and that would ruin my family. I was forced to give up all of my licenses as part of the plea bargain.
I am not sure how to approach this one. I might want to talk to some of his current patients and see what they feel about his treatment.
As far as viruses go. I was told I have H.Pylori but I don't know about any others that might be aggravating my symptoms.
Posted by johnlyme1 (Member # 7343) on :
Can you find out what this Docs credentials were? It sounds like he may have been in the thick of things trying to do a lot of good and the Feds didn't like that. We have one LLMD that the feds are trying to shut down on some of the littlest things, they told him to follow the Bad camp on treating lyme and they would leave him along.
Posted by CD57 (Member # 11749) on :
Sounds like you and I see the same ND! PM me if you want to talk about her/him. She costs a boatload and I am about to give up on her. By the way, she told me I have the exact same problem as you re: detox. And every time we talk, it costs $1k for her time plus supplements.
The LLMD, if it's the one I'm thinking of, is Dr H, who I think is great and knows every manifestation of the illness. I'm sort of shocked to her that he wants to give up on you after a year.....that doesn't sound like him. What are your co-infections? I can give you the name of the other LLMD I see down here in the Bay Area, now that Dr S.H. has moved down here. She doesn't turn people away for treatment that I know of, ever. She moves a lot more slowly than he does though.
Posted by twopuggles (Member # 10971) on :
JohnLyme1 I will PM you about this.
CD57, Yes I am seeing the same docs as you. Dr.H did not exactly say he was giving up on me, but he was saying that he cannot help me with my leaky gut problems, and getting me to the point to even be able to treat the Lyme. Then he referred me to this other guy. A friend of mine is also seeing Dr. felt the same way when she say him last.
He thinks the ND is not addressing the Lyme's though, and I think he is right. That is why he was going to add Augmentin to my regime. I was going to give her one more chance, but I am not sure. The only thing that keeps me hanging on is that she has cured herself of everything I currently have. But I just can't afford it anymore, and Dr. H understands. I think that is why he gave me the other doc as an alternative.
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