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Old 07-09-2008, 08:54 AM   #1
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steve1906 HB User
Unhappy LLMD Boston, MA

It feels like my body is shivering all the time and the only thing that helps is walking.

I'm always freezing cold (3 months) and very sensitive to any type of breeze or airconditioner. Also have a rash (3 months) on my Stomach that comes and goes mostly stays.

They did two Biopsy on the rash and both can back okay. It's all driving me crazy!!! I've had a MRI of the Sprine & Brain and tons of blood work that all came back fine.

They also checked for Lyme's Disease and thyroid can back OK. I have all the signs of depession and Anxiety but I think its all due to not knowing why I'm freezing and having this electric shock feeling through my body (mostly from my Stomach up).

They put me on prozac 20mg. three weeks ago thinking it was depression but I'm still freezing to death and the prozac didn't help. Also sweating alot must be the prozac.

If you think I should see a lyme doctor I would need some doctors names from the Boston, MA area.[/LIST]Anyone have any throghts on this?
Thank You!!!

 
Old 07-12-2008, 09:07 AM   #2
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Re: LLMD Boston, MA

Look up Dr. S. Donta, Boston/Falmouth, MA

Last edited by luckeeluke; 07-12-2008 at 09:08 AM.

 
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Old 07-12-2008, 09:39 AM   #3
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Re: LLMD Boston, MA

Thank You luckeeluke!!! I'll try and find him.

 
Old 07-12-2008, 06:09 PM   #4
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Re: LLMD Boston, MA

Hello ticker,

Thanks for the note:
Here's some of my list let me know what you think...

May 20, (2006)
• Pain on right side of stomach – MRI Lumbar Spine/MRI Thoracic spine – Found some problems but they said it doesn’t relate to theses problems below.

(2007)
• July – My GP. Chest pains mostly left side.Stress test (OK).

(2008)
• February – Flu
• February – My GP - Sinus infection 1st. prescription didn’t work 2nd.IC Clarithromycin/cn
500mg. Still having chest pains – 3-5-08 stress test, chest x-ray (Both OK)
• March 27th.– Dermatologist, Rash (sides of both lower legs, both elbows,
and stomach – they said it was eczema

• April 15th.–Surgeon Lump removed from head (sebaceous cyst) (OK)
• April 25th.–My GP. Chills/Shivering cold all the time did blood work (OK)
• May 1st – My GP., Rash, Chills/shivering (Biopsy side of stomach) lots of blood work
– blood (OK) Biopsy-Some form of drug related. Was not taking any drugs
• May 12th. Chest pain and chills/shivering went to the ER and they kept me over night.
Didn’t find anything wrong. Chest x-ray EKG blood work.
• May 15th. My GP. follow up + rash chills/shivering – schedule an appointment with
dermatologist-said it was eczema.
• May 22rd. Dermatologist she did a biopsy of my left elbow rash Came back drug
related? Was not taking any kind of drugs???
• May 28th. I stopped all Vitamins for two weeks: (One a day Vitamin) – (omaga3) – (B12
5mcg) No change
• May 29th. Winchester Hospital Allergy & Immunology. Did a allergy test – I’ve always
had many allergy – he said he couldn’t help me with these problems.
• June 2nd. (Gastroscopy) found a lump in the stomach area said
He didn’t think it was a problem and would repeat in one year.
• June 4th. Neurologist – said I should have a Cervical Spine MRI on June 6th came
back with mainly bulging disk that shouldn’t cause any of these problems.
• June 10 Neurologist said I should have a Brain MRI June 12th. I haven’t heard the finally
findings – should know Monday July 14th. They said they did see some mini strokes.
• June 11th. (Colonoscopy) (OK)
• June 18th. My GP. Put me on Prozac 20mg. for Depression!!!
• June 26th. Psychiatrist – gave me sleeping pills and sent me on my way!!!
• June 30th. Psychiatrist/Consoler – he just wanted to talk about my family life. I told him I
would like to discuss what’s happening to my body for the past three months.
He said he couldn’t talk to me about medical questions-I said why am I here!!!


Meds: (One a day Vitamin) – (omaga3) – (B12 5mcg) (Prozac 20mg.)

Last edited by steve1906; 07-12-2008 at 06:15 PM.

 
Old 07-12-2008, 06:56 PM   #5
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Re: LLMD Boston, MA

Steve,

Sam Donta saved my life when no one else would treat me for more than 3 weeks with antibiotics. It took two years of powerful meds,but I have my life back and I was where you are .(read my posts,because my ordeal is WAY to long). Dr. D takes insurance and his staff was very supportive when I was anxious and scared. It can take 6 months to get an appointment with him so get going NOW and make the appointment!

 
Old 07-12-2008, 07:17 PM   #6
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Re: LLMD Boston, MA

Hello Mesmall,

I'm so happy you're feeling so much better! Thanks for the note I'll find Dr Donta's info on line.

Have a good night

 
Old 07-12-2008, 08:26 PM   #7
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Re: LLMD Boston, MA

Hi Steve. I am sorry you have been through so much. I think we can all relate to being very sick and not being able to get help. So often when doctors cannot determine what is wrong based on their experiences, they blame the patient or give them meds for their symptoms instead of finding the true cause. It is frustrating and wrong.

What does your rash look like? Although a bulls-eye rash is a definite sign of Lyme, there are other Lyme rashes also.

Both Lyme and the co-infection Babesiosis (which is similiar to malaria) can cause chest related symptoms and chills. Do you ever have shortness of breath and/or night sweats? From what I understand, there are many cases of Babesiosis in MA.

Last edited by ticker; 07-12-2008 at 08:39 PM.

 
Old 07-12-2008, 09:41 PM   #8
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Re: LLMD Boston, MA

Hello Ticker,

I don't remember getting the bulls-eye rash; the rash I've had for a couple of months was red and all over my stomach.
No shortness of breath problems but I do still have night sweats.

Thanks, Steve

Last edited by steve1906; 07-12-2008 at 09:42 PM.

 
Old 07-13-2008, 06:12 AM   #9
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Re: LLMD Boston, MA

Hi Steve. Night sweats can be one of the hallmark symptoms of Babesiosis. Make sure you are tested for it.

 
Old 07-15-2008, 02:33 PM   #10
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Re: LLMD Boston, MA

Quote:
Originally Posted by mesmall View Post
Dr. D takes insurance
The insurance part is way important (for me at least), because if you're broke like me, paying for stuff out of pocket is not an option. I need to work, need to pay the bills/rent etc., and I need a doctors that take medical insurance.

I pay $20 a week for medical insurance through the non-profit I work at- I just had to make use of it as much as possible and continue to use it.

 
Old 07-15-2008, 02:42 PM   #11
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Re: LLMD Boston, MA

Quote:
Originally Posted by ticker View Post
So often when doctors cannot determine what is wrong based on their experiences, they blame the patient or give them meds for their symptoms instead of finding the true cause. It is frustrating and wrong.
It'd be interesting to do some kind of poll. I bet most folks have been to 5-10 doctors or more. Some folks 20-50 docs or more. Like you said it gets damn frustrating. You feel run down physically and mentally, then you have to deal with docs telling you that it's all in your head and that you need to take some anti-depressant med to make you all better.

Steve- hang in there. Find that one doc that will listen to you and help you, or at least try some outside the normal box stuff- nothing too wacky though . It's a process and really discouraging but keep pushing though as much as you can. Get answers form doctors, take pictures of rashes, record your symptoms on a typewritten file or at least on paper, summarize the main symptoms and the timeline, and if you can get copies of your medical record/tests/lyme tests/bloodwork/etc.

 
Old 07-15-2008, 03:03 PM   #12
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Re: LLMD Boston, MA

Quote:
Originally Posted by ticker View Post
I do not have any personal experience with Dr. but I know many people who have seen him including a good friend of mine. I will post what I know from my friend and what I have heard from others, but first I want to say that everyone needs to do what is best for their situation. I agree that doctors may help some people and not others.
He was the first doc that didn't think it was all in my head; I respect him for that. I personally have made a lot of progress while seing him only twice in 4.5 months. Now like you said that doesn't mean someone else will se progress with him.

Quote:
Originally Posted by ticker View Post
I believe he uses Quest lab for testing, which is not a good lab for tick-borne illness testing. As far as I know, he does not test for co-infections which is very important. As someone who has had several, I know firsthand how important it is to be tested for them. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This was true in my case. I know many people, including my friend, who got much worse because they had co-infections that were not addressed. Treatment time was wasted.
I can totally understand this; I have heard of peopel getting worse because of this. Certain antibiotics work with certain bacteria/protozoa. I think that's why it might be important to mix in some natural herbs along wiht the antibiotics. Obviously that's not as effective as choosing the right antibiotic for the right bacteria/protazoa.

Quest is marginal at best, but insurance covers it. He said we are doing this thing clinically with me. Concentrating on all my symptoms and how I am feeling in relation to the different antibiotics etc. SURE I'd like an actual answer, but am I going to get one right now, probably not. HAve I gotten a definite answer in the last 3 years, not really. Will I test with Igenex soon, maybe.

Quote:
Originally Posted by ticker View Post
From what I have heard, he only prescribes two protocols: either Tetracycline or Biaxin with Plaquenil. There are many different protcols used to treat Lyme and co-infections. Some people may respond to these two protocols, some may not. He says these protocols will treat the co-infections. This is not true from my experience and from the research I have done.
I actually think the Tetra is much better than the Doxy, especially at the 1500mg dose. All I know it was kicking the hell out of something. It's way hard on your stomach, now I'm actually glad to be on the Biaxin/Plaquenil. The biaxin/Plaquenil is a good combo too, probably made the most progress with it. Again who really knows. There needs to be more research on these drugs in relation to Lyme. Also natural herbs in relation to Lyme. Probiotics in relation to Lyme. Foods in relation to Lyme . . . on and on . . .

Quote:
Originally Posted by ticker View Post
From what I understand, he advises patients not to take vitamins because he thinks they feed the bacteria. I believe he may be the only Lyme doctor who believes this. Most doctors recommend taking vitamins and eating healthy.
I actually agree with Dr. D on this one. Back about 2 years ago I was trying to take multivitamins etc.- They actually made me feel way worse. I stopped taking them and just tried to eat well as I could, lots of veggies, meats, some fruit, cut out gluten, cut out lots of processed stuff. That probably isn't the right thing to do (not take vitamins), but it was what my body was telling me. I had a lot of gut issues and I don't think my gut was able to take a half or whole vitamin and actually process it. The fact that I actually felt worse when I took them, really does make me think about the fact that he tells people not to take them. I also think he says that because of the Tetra and how it can be blocked by certain minerals/vitamins that are taken near it. There is no doubt that vitamin and minerals are important in Lyme or in most diseases for tht matter.

Quote:
Originally Posted by ticker View Post
Again, I do not have any personal experience with him, and each person needs to do what is best for their situation. I highly recommend that anyone who has or who may have Lyme research as much as possible so they can make the best decisions for their treatment. What matters most is if you trust him and he helps you get better. I hope your treatment is going well.
x2. Research and talking to anyone you can talk to is key. Forums, books with lots of citations, jounrnal articles, support groups, other paitients in the waiting room. Going to different doctors even though it's a pain, motivates you to find that one doctor that will help you to start to improve.

I can't tell you how reassuring it was and how many similaritites in symptoms and time span that I had with other people that were confirmed as having Lyme. Wicked helpful to say the least.

Last edited by luckeeluke; 07-15-2008 at 07:54 PM. Reason: added stuff

 
Old 07-16-2008, 06:31 AM   #13
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Re: LLMD Boston, MA

I was told by Dr. D that vitamin B is the only compound Lyme can't make,when I got to his office,I was taking all kinds of vitamins trying to help myself.I was really feeding the Lyme by taking B's. Also, I was told to get off of C because Lyme loves an acidic environment,and I was creating the perfect environment by taking 1,000 mg of c dailey. If you eat a healthy diet,which is recommended by Dr. D you will get the vitamins you need. All I know is that I did everything he said and I am well now. It took two years,and I did get worse before I got better,but I hung in there with their support because I also had no choice but to trust them. I wonder if Tickers friend might have given up to soon and just assumed that Donta wasn't treating it right because she got worse. I had those moments of doubt too because the progress was so slow I couldn't see it.I have my life back now and I highly recommend Dr. D.

 
Old 07-18-2008, 03:37 AM   #14
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Re: LLMD Boston, MA

Quote:
Originally Posted by ticker View Post
From what I have heard, he only prescribes two protocols: either Tetracycline or Biaxin with Plaquenil. There are many different protcols used to treat Lyme and co-infections. Some people may respond to these two protocols, some may not. He says these protocols will treat the co-infections. This is not true from my experience and from the research I have done.
I think the Plaquenil might be helpful for Babesia. I suppose herbs can be added into the mix to to target suspected or known co- infections. Artemesinin might be something additional to look at. That way your antibiotics target one thing and your herbs might target a different thing.

 
Old 07-18-2008, 08:18 AM   #15
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Re: LLMD Boston, MA

Plaquenil helped my babesia.

Guess we're all different.


 
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