I'm diagnosed with fibro and cfs, but I have so many lyme symptoms it's clear I can't ignore it. I've been sick for 4 years.
I am thinking of trying to get an appt with Dr. Sam Donta in MA and I would like to know what I'm in for. I've read so many mixed or even negative things and I'm nervous.
Does anyone know:
If my insurance should cover this? (I have good insurance, but I know some lyme docs won't even deal with insurance companies.)
Does he treat for positive lyme tests or even if he has a strong suspicion of lyme? (My ELISA test in Dec was negative and my doctors have completely dismissed all posibility of Lyme due to this.)
I don't even know what else to ask really. If anyone has experience with any Lyme docs in MA, I would be so grateful to hear your experiences.
Also, I read something last week about how Alzheimer's can actually be late lyme disease that's left untreated. Is this true?
I see Dr. D. I have had no positive Lyme tests, including his. he uses Quest which is not a good Lyme lab. He diagnosed me in 20 minutes based on my symptoms and history. I had faxed him my information and prior test results (all, not just Lyme) before hand. He said he was positive I had Lyme and if I did not, it was something very close that has not been discovered yet.
I am not really happy that he does not use Igenix- I'd like a better shot at a positive test for my records although I agree that I have Lyme. I asked him to order an Igenix test and he said I did not need one and reminded me I am free to get a second opinion. (Really, He does not need one)
He is covered by my insurance which is huge. I tried Plaquenil and Biaxin first, had a reaction and now I am on Tetracycline. (I hear he only goes with those two therapies so he must have some success as I know patients who like him) Dr. D tests for co-infections but does not treat them specifically, saying that the abx's he uses covers a wide range of bacteria. However, I hear not all the co-infections are bacteria. Not sure if that is true. (anyone?)
So, Bottom line, I am thrilled that he diagnosed me when no one else in mass, including MGH, would and because he is covered by insurance, I am trying his treatments and if I get better, great and if I do not, I will move onto a second opinion. However, I have a case of Lyme that is not debilitating. I am still functioning. If I did, I would not fool around but go directly to someone else. I do know someone who was treated successfully by Dr D. who was debilitated. He is very happy with him.
Truthfully, the more I investigate Lyme and the medical community, the more I am convinced that ALL the Lyme doctors are hit and miss. Every case is different and what works for one person may not work for others. I have spoken to people who are being (or have been) treated by Dr. Phllps in Ct, Dr Brrscn in NY, Dr Py in MA, Dr Hrrwtz in NY, They all have both good and bad things to say about their doctors. (if you read the transcripts of the Dr Jones case in CT, which Dr Phllps testified at, you will find that Dr Phllps does not use IV- I found that to be very odd) Most people seem to go the medical route as far as they can and then turn to alternative medicines for additional relief. Currently, I have a foot in both camps and am doing the abx route and alternative medicine. It is making it difficult to know which is doing what, and I could not do it if the doctor or the abx's were not covered by insurance because the alternatives never are. But I am an impatient person and want to try to cover all the bases as soon as possible.
If anyone out there has had 100% success with their medical route, I would love to hear it!
Desperate- one more thing- If you want to continue to get feedback on docs in this area, a good place to go are the several Lyme support groups in Mass. You can find them on the internet. I was actually surprised this weekend looking at an LLMD list how few LLMDs are even in this area, including CT!
The good news is that I spoke with my case worker at my health insurance company and it is her opinion that docs in this community are having to take more notice of Lyme recently becuase there are too many patients to ignore. She thinks there is a change in the air regarding Lyme.
That is great to know. I was doing research on other docs you mentioned who might be fairly close to me and yikes, the first thing that I found for Dr. Py was disciplinary action!
Am I wrong to feel very anxious about being treated by one of these lyme specialists? I worry that I have lyme symptoms and can't get a dx, but what if there's a slim chance I don't have it and being treated for it could just make me worse?
As a teenager I took antibiotics like doxycycline and minocyclen for years for acne and although my skin looked great, I truly believe I am suffering from long term gynecological issues that they may have played a role in. (so many years of yeast, etc)
I'm also afraid I was on them so long in the past that I may have a resistance to them anyway.
Very good questions and you are right to be asking them. I took long term antibiotics for acne too. I think most of teh LLMDs have a history of complaints at one time or another. Not sure if Dr. Donta does. I think that with the abx's, you will know if they are doing anything for you or not pretty early. If they are not helping or you are not herxing, maybe they are not doing anything? Maybe Ticker will know.
I guess feeling like you do, I would go to a doc that definitely uses Igenex. I went to so many docs who checked so many things (all negative) and my symptoms align so much with Lyme, in addition to the fact that 3 other people in my family have had the bullseye, we are woodsy people and my symptoms started 1 month after I went off the acne abx, I am 99.9% sure that is what it is- I do not doubt it. How many other illnesses give you high sensitivity to alcohol? I have not heard of one.
I started something called Immune response training today from an office in RI. They are on line. It is very interesting. I'll let the board know if it works. There were people in the group from CA, GA, Co, South Africa, Ontario, Nevada, VA, NY, TN, RI, CT, MA, MI, NJ and more!
I have not read the replies yet, so I apologize if I repeat information.
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
I do not have any personal experience with this doctor, but from what I have heard from others (including people I know) I would not recommend him. The closest doctor I know of who comes highly recommended is Dr. Steven Phillips in Wilton, CT.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.