richedie
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posted
Saw Dr. F in Kennett Square, Pa the other night. Seemed like a really nice guy who is very patient. I have come to notice this with all D.O.s I have met. After going through my history and the history of Lyme, he felt he was fairly confident of me having Lyme. Especially with how endemic it is in this part of PA, plus the fact that we were hiking in upstate New York as well. He took a lot of time to explain why blood testing fo Lyme is so very unreliable and ca not be relied upon. He showed me some of his patients who have had a negative test one month, positive months later, then negative months later and so on. He went through a lot of similar cases, people who were denied treatment after having the rash and succesful treatment only to come up negative in the blood test. He also explained why youn rarely see the rash the first time.
He id show me a rash on the back of my neck indicative of an infection.
Anyway, he started me on Flucozanol so we'll see how it goes. He said he has great success with patients using this, so if I do have Lyme, I hope this helps.
I was so upset last night, and the pain got so bad in my wrist, I broke down in tears. I feel like I am hitting a breaking point. I hate that my 4 year old has to see this.
If I do in fact have Lyme....does this mean certain disability? No more exercise, walking, etc?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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TF
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I lost 5 years of my life to lyme (plus babs and bart). Once I got to a top notch lyme doc, I was well in 1 year.
Now, it has been 3 years since I have been off meds, no symptoms, enjoying my life--the same life I had before this disease from hell.
So, take the treatment and get your life back!
As the treatment progresses, you will notice improvement. At some point, you will have to start exercising (per Burrascano) in order to get well. It helps the immune system. You start little by little until you are up to a 1 hour routine.
I know many people who have fully recovered from lyme and co-infections and have gone on with their life, end of chapter. So, take hope.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keep reading on this board so you will be armed with information. Seems you need to know more about what Lyme treatment is and will be.
I'm glad you feel more confident that what you are dealing with is Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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cantgiveupyet
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Im glad you had a good appt. He is really into the Difflucan protocol. I think he likes to get the germ/yeast levels down. I agree with derek though, I dont find that he guides my treatment, but if I ask about a protocol we discuss it and often he lets me try it.
I would give the difflucan a month and if your not getting better than ask for something else.
Difflucan got rid of my numbness and allowed me to drive again way back in 2006, Dr F didnt prescribe it though.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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I see an LLMD near him I think is very knowledgable.
Anyway, I was on oral antibiotics for 3 years and then diflucan for about 8 months as part of my Lyme treatment - there are LLMDs using it to treat Lyme, I believe it has antimicrobial effects or something as well as antifungal.
So, I actually got very very close to "remission" on the diflucan (+ lots and lots of supplements and Pekana remedies)
That was about a year ago, so I stopped all formal treatment. Some symptoms came back right away (which I admittedly kind of ignored) but by Dec 2007 I was in full Lyme relapse. Rats. Oh well. I started Bicillin shots last week and am starting the Cowden protocol too.
I am a very severe case (dx 2003 but lyme 30+ years) and I also got exposed to mold about a year into treatment that sure put a wrench into my progress.
Sorry for rambling. My point is, diflucan can be a helpful "piece of the puzzle" in your treatment but again, it's only a piece...
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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richedie
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quote:Originally posted by TF: I lost 5 years of my life to lyme (plus babs and bart). Once I got to a top notch lyme doc, I was well in 1 year.
Now, it has been 3 years since I have been off meds, no symptoms, enjoying my life--the same life I had before this disease from hell.
So, take the treatment and get your life back!
As the treatment progresses, you will notice improvement. At some point, you will have to start exercising (per Burrascano) in order to get well. It helps the immune system. You start little by little until you are up to a 1 hour routine.
I know many people who have fully recovered from lyme and co-infections and have gone on with their life, end of chapter. So, take hope.
Thanks...I want answers so bad I am almost hoping this really is Lyme at the root of my issues and we get somewhere now.
This is encouraging. How did you know he was atop doc and what did you do the p[revious 5b years, see regular physicians?
People around hear say Dr. F is a top Lyme doc and sort of a hotshot in the area for this so I am hopeful. He has a lot of patients who have written nice articls about him in local papers. He was featured in local Philly paper concerning the Lyme wars.
What about bad pain in the wrists? Can Lyme do this?
I still wonder about the pain and ringling in my feet. the podiatrist says bad arches but the Lyme doc says it is Lyme or both. He said pressure on an area will aggrevate so maybe that is why my feet only really hurt during the day with walking and standing.
Derek,
I sent a PM, thanks.
So I have no idea where to go now. I am runinng out of days off from work so long travel for docs is tough. Are there ANY in south eastern PA or jersey?
Should I ask Dr.F for something else?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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TF
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posted
I sent you a private message.
Posts: 9931 | From Maryland | Registered: Dec 2007
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cantgiveupyet
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I had a very bad painful right wrist when things hit me hard. At neurosurgeon number two appt, i went thru my symptoms and said I thought it was carple tunnel. Dr said let me make that diagnosis.
He thought it was repetative stress. It vanished and was replaced with lots of other symptoms.
So, yes lyme etc can cause wrist pain.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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METALLlC BLUE
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TF, did you send her a list of doctors? PM me if you didn't already get a list for PA and NJ.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
The places in NY, look good. I wish I could find someone in South PA or Jersey who will do oral and intravenous antibiotics, plus the natural approaches and immune system modulation.
Problem is to find someone who will start treatment without a positive blood test. That is part of the trick. Some docs say it is just psychosomatic, some say I just have bad arches and repetitive stress injuries to my wrists. That doesn't explain the nausea, odd pains elswhere, increase of floaters in my eyes, and the other list of symptoms I had when this started, that have since gone away.
Dr. F. noted a rash on the back of my neck he said is common with infections.
I would think the Lyme Center in New Brunswick would be good, why not? I knew someone who had treatment at this location.
Maybe I can convince Dr. S. in Chadds Ford, PA to send my blood to the NJ lab or Igenix and hope for a positive (assuming I do have Lyme) because I think he would start treatment.
Although, Dr. S. was kind of odd in that he laughed and said, "what are you going to do if it comes back positive? Take antibiotics the rest of your life? You don't ant that."
If this is not psychological, or coincidental mechanical issues, I need to find a doc who will treat regardless of blood test, unless I get lucky with a positive test.
i am primarily a vegetarian so the low carb thing is not easy.
My goal is to find someone in South PA, South NJ or Delaware who meest these criteria or the treatment guidelines of Dr. B., etc.
Not sure how important the blood test is at this point other than it helps some docs take it seriously.
My hematologist got back to me and said the MGUS could not be caused by Lyme although there are Lyme docs who argue against that. The hema also says it wouldn't cause my symptoms although tell that to people I talk to with MGUS who have pain. He also said the Lyme tests are very good and accurate although I have seen first hand, tests of others who were all over the map based on the time of test.
Anyone have a list of good docs in Southern New Jersey or Delaware?
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METALLlC BLUE
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I have a massive list for NJ, but I have no one in Deleware. Does anyone have any LLMD's in Deleware that they're hiding? PM me.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
He was nice to you? Hmmm, are you male or female?
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richedie
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Got this from someone...Thoughts on this?
"As for Lyme not causing positive tests in the first exposure, well that's simply wrong. There are certain tests that have difficulty catching it early on in the infection, but others that CAN catch it at the early stage. Be aware that there are certain "Lyme doctors" who diagnose virtually everyone they see with Lyme, and make a great deal of money off of it, subjecting their patients to a bunch of antibiotics that don't help, and may cause fungal overgrowth. Frankly, I think I'd take the word of an infectious disease specialist before I'd take the word of a "Lyme doctor." Just my opinion, having a cousin who has been through all of this with a "Lyme doctor." Eight years of that, and he's no better off than in the beginning.
If you don't have any numbness, I think the nerve biopsy will be a waste. As for pain, beginning neuropathy has to cause pain generally, before it causes numbness. The nerves "complain" (pain) before they die (numbness). So if you don't have any numbness, don't count on seeing anything in terms of a reduced nerve count upon biopsy."
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
If Dr S said that, NO WAY I'd go back. With an attitude like that, you'd never get well with him.
As for the comment about ID Ducks...go ahead if you think it will get you anywhere. I don't know of any ID ducks who will treat longer than 4 wks... and they won't treat at all if your test is negative.
You're in a bad place for Lyme treatment. Keep asking around here at Lymenet to find a qualified LLMD for you. There's got to be one.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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METALLlC BLUE
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quote: "As for Lyme not causing positive tests in the first exposure, well that's simply wrong. There are certain tests that have difficulty catching it early on in the infection, but others that CAN catch it at the early stage.
If the body isn't producing antibodies as a result of being a newly aquired infection, no testing depending on antibodies will be effective. Biopsy of the site of the tick bite is going to be more effective. PCR, Antigen, etc -- might be useful. These tests are not run by 99.9% of doctors who see tick bites.
quote: Be aware that there are certain "Lyme doctors" who diagnose virtually everyone they see with Lyme, and make a great deal of money off of it, subjecting their patients to a bunch of antibiotics that don't help, and may cause fungal overgrowth.
That's rare (Over diagnosis by LLMD), given I have a list of nearly every LLMD practicing in the world, and I keep notes on each one from patients who see them. There is no doubt that occasionally an incorrect diagnosis is made, but I've never seen one case made with an LLMD that wasn't compatible with tick-borne illness. There are other conditions which can mimic Lyme, which is ironic because Lyme mimics hundreds of conditions.
quote: Frankly, I think I'd take the word of an infectious disease specialist before I'd take the word of a "Lyme doctor."
The words of an individual who has never been the one ill and having seen countless infectious disease specialists who "misdiagnosed, mislead, mistreated, and.....in their ignorance actually became an obstacle to their recovery process.
If the infectious disease specialist is up to date on all research available on tick-borne illness and makes rational use of that data in a clinical setting (LLMD), then yeah, I'd take the world of an LLMD with an infectious disease background before that of a family practitioner who was also an LLMD. It's just obvious, but that isn't the intent of this individuals statement. In the statement made, it is implied an IDSA infectious disease doctor would be given more weight than any LLMD.
quote: Just my opinion, having a cousin who has been through all of this with a "Lyme doctor." Eight years of that, and he's no better off than in the beginning.
8 years, perhaps he was ill for 28-38 years before that, given steroids for misdiagnosed ailments, and or has a co-infection or other disease which is poorly understood, or not currently discovered at all by current scientific research. This type of logic doesn't mean the doctor failed, or that the diagnosis was incorrect based on the most current available information.
quote: If you don't have any numbness, I think the nerve biopsy will be a waste. As for pain, beginning neuropathy has to cause pain generally, before it causes numbness. The nerves "complain" (pain) before they die (numbness). So if you don't have any numbness, don't count on seeing anything in terms of a reduced nerve count upon biopsy."
That's simply incorrect. Biopsy is actually extremely useful in the hands of a tick-borne specialist with a microbiological background -- that's for one thing (Not that he/she disagreed with this), and two, numbness and neuropathy in Lyme Disease are not always a degenerative process. Patients with Lyme and or tick-borne infection who experience numbness often see the numbness alleviated entirely with appropriate therapy. Neuropathy also often significantly improves and or all but disappears.
Different patients recover at different rates, because they had different experiences prior to diagnosis. They may have had a different strain, a different immune response, different drugs/diagnosis, immunosuppressio etc. The variables in tick-borne infection are many.
So yeah I have some thoughts on it. Just my opinion, but making assumptions isn't a wise way to proceed.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
MetallicBlue,
Thanks!
What is considered a newly aquired infection?
How can anyone determine how long one has been sick?
Only problem I have had since the mid 90s is Uveitis in my right eye, that still bothers me to this day.
I have had some surgeries and one in October that may have weekended my immune system so that Lyme could rear its head. Then again, based on symtoms at the time, maybe I had just been infected, unless some of it was anxiety, stress, mid/body, etc.
Initially it just started with some tingling and then pain in the ball of my right foot. Over the next month or so that lead to tingling in both feet, lower legs, awaking with numb feet, legs, painful knees, tremors, twitches, shakes, nausea and fatigue mostly in the morning. Vibrations in hands, fingers, legs, temperature dorp, trouble swallowing, floaters in my eyes, etc. This all started 3 weeks after a week in the Adirondacks of NY and 2 weeks after ulnar entrapment surgery. I aske for a broad spectrum antibiotic in case this was from the surgery but the doc said no. We also live in Chester County, PA - Lyme central.
If it was Lyme, could it have stasrted then with such bad symtoms or maybe it just awoke?
I have since been diagnosed with Monoclonal Gammopathy of Undetermined Significance. I have heard of people with bad symptoms from MGUS, but why so suddenly!? Dr. F. thinks the MGUS could easily be from Lyme.
Then there are those who say this is all psychosomatic. Heard of Dr. S? He wrote the book on min/body disorders. http://www.healingbackpain.com/ I was told seeing the right psychiatrist will resolve this along with myofascial release and trigger point therapy.
The doctors tell me I just have a lot of symptoms but none are related, MGUS is a coincidence, bad arches causing foot pain, repeditive stress injury causing wrist pain, floaters as part of aging, etc. So why did I first notice floaters when all my other symptoms began? Anxiety over my feet?
Main symptoms now are floaters, pain in left wrist, hands and arm, occasionally in right hand and wrist, some nausea, tingling and mostly pain in right foot, sometimes left foot. Doc F. says there is rash on the back of my neck indicating an infection.
And what about diet, if this is Lyme? Some say NO Carbs!
I am so confused.
PS, can you PM me any GOOD docs in southern Jersey? I also think I found one in Lancaster, PA who follows Dr. B's protocol.
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
bump for metalicblue
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METALLlC BLUE
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posted
quote: MetallicBlue,
Thanks!
What is considered a newly aquired infection?
Welcome. Those are just my opinions. Based on research, a newly acquired research is usually within the first month. After that (even before that), second stage symptoms can begin manifesting. The line is arbitrary. Also, many Lyme Disease specialists define Chronic Lyme as 1 year of infection. This doesn't mean someone who was bitten May 1st, and who starts treatment on May 10th, can't develop Chronic Lyme Disease.
quote: How can anyone determine how long one has been sick?
We can't usually pin point it unless we saw objective indications, such as the tick, the rash, the flu-like onset of symptoms, or something of that nature. Many times even these blatant indications are not enough to move a patient to get treatment, because they may not know what they're dealing with. They may think, meh, just a bug bite, or "Oh another weird rash from a spider, or "Must be the flu, wow weird that it's in the summer, but...oh well."
Being able to tell how long you've been sick is pretty much a guessing game for everyone else who doesn't remember seeing a tick, or a rash, or doesn't know the definite date symptoms began.
Testing can aid a little in narrowing the field, but usually we assume the infection began "Around these years, or year." for Chronic infected patients.
quote: Only problem I have had since the mid 90s is Uveitis in my right eye, that still bothers me to this day.
It could be a symptom of tick-borne illness, or it might not be. Lyme patients do report it, but hundreds of known things cause it.
quote: I have had some surgeries and one in October that may have weekended my immune system so that Lyme could rear its head. Then again, based on symtoms at the time, maybe I had just been infected, unless some of it was anxiety, stress, mid/body, etc.
Exactly, this is the confusion most patients and doctors meet. Variables are abundant in Lyme Disease which make's it all the harder to understand, and to know where we are in treatment or the larger process of infection. Other tick-borne infections follow the same pattern usually.
quote: Initially it just started with some tingling and then pain in the ball of my right foot. Over the next month or so that lead to tingling in both feet, lower legs, awaking with numb feet, legs, painful knees, tremors, twitches, shakes, nausea and fatigue mostly in the morning. Vibrations in hands, fingers, legs, temperature dorp, trouble swallowing, floaters in my eyes, etc.
Typical symptoms of tick-borne infection. But again, typical of a lot of diseases. Once again, another reason for such extensive misdiagnosis and difficulty for patients in "Believing" they're fighting the right disease or on the right track. Without positive blood testing, a patient who has gone undiagnosed for a long time has a very hard psychological battle to face. A lot of doubt and a lot of suffering.
quote: This all started 3 weeks after a week in the Adirondacks of NY and 2 weeks after ulnar entrapment surgery. I aske for a broad spectrum antibiotic in case this was from the surgery but the doc said no. We also live in Chester County, PA - Lyme central.
That is one of your very strong circumstantial pieces of evidence, but again -- it's only circumstantial, as not everyone walking around in Chester County with those symptoms has Lyme or a tick-borne infection. But it does raise the probability and should perk up a doctors ears to "consider" an infection endemic to that area!
quote: If it was Lyme, could it have stasrted then with such bad symtoms or maybe it just awoke?
Both are possible.
quote: I have since been diagnosed with Monoclonal Gammopathy of Undetermined Significance. I have heard of people with bad symptoms from MGUS, but why so suddenly!? Dr. F. thinks the MGUS could easily be from Lyme.
Dr. F is correct. The best way to know how long you've had the infection is standard panel blood testing, WBC, Creatin, BUN, combined with a CD-57, a Lyme Disease and tick-panel from Igenex, perhaps Fry (Stonybrook would be the most credible lab of the "mainstream labs, but it's not significantly better than the others." -- and finally a Brain SPECT scan and MRI (The MRI is optional). If you want to get really hard core, have a tissue biopsy sent, as well as urine, blood, and other fluids that Fry Labs or Igenex can use. I would stick with standard testing from igenex to start. Cost can be a factor here.
Combine this, with family history, activity outdoors, prior diagnostics and medical history, whether tick-bites or various other insect bites were seen, sexual history -- you know, the whole deal.
In the end, a competent Lyme Disease specialist can tell the difference between most diseases and tick-borne infection, though many can't entirely distinguish one tick-born infection from the other if a lot of symptomatic overlap is present and all testing is negative.
quote: Then there are those who say this is all psychosomatic. Heard of Dr. S? He wrote the book on min/body disorders. http://www.healingbackpain.com/ I was told seeing the right psychiatrist will resolve this along with myofascial release and trigger point therapy.
What are the rest of your symptoms? Here is a list:
Persistent swollen glands Sore throat Fevers Sore soles, esp. in the AM Joint pain Fingers, toes Ankles, wrists Knees, elbows Hips, shoulders Joint swelling Fingers, toes Ankles, wrists Knees, elbows Hips, shoulders Unexplained back pain Stiffness of the joints or back Muscle pain or cramps Obvious muscle weakness Twitching of the face or other muscles Confusion, difficulty thinking Difficulty with concentration, reading, problem absorbing new information Word search, name block Forgetfulness, poor short term memory, poor attention Disorientation: getting lost, going to wrong places Speech errors- wrong word, misspeaking Mood swings, irritability, depression Anxiety, panic attacks Psychosis (hallucinations, delusions, paranoia, bipolar) Tremor Seizures Headache Light sensitivity Sound sensitivity Vision: double, blurry, floaters Ear pain Hearing: buzzing, ringing, decreased hearing Increased motion sickness, vertigo, spinning Off balance, ``tippy'' feeling Lightheadedness, wooziness, unavoidable need to sit or lie Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity Facial paralysis-Bell's Palsy Dental pain Neck creaks and cracks, stiffness, neck pain Fatigue, tired, poor stamina Insomnia, fractionated sleep, early awakening Excessive night time sleep Napping during the day Unexplained weight gain Unexplained weight loss Unexplained hair loss Pain in genital area Unexplained menstrual irregularity Unexplained milk production; breast pain Irritable bladder or bladder dysfunction Erectile dysfunction Loss of libido Queasy stomach or nausea Heartburn, stomach pain Constipation Diarrhea Low abdominal pain, cramps Heart murmur or valve prolapse? Heart palpitations or skips ``Heart block'' on EKG Chest wall pain or ribs sore Head congestion Breathlessness, ``air hunger'', unexplained chronic cough Night sweats Exaggerated symptoms or worse hangover from alcohol Symptom flares every 4 wks. Degree of disability
quote: The doctors tell me I just have a lot of symptoms but none are related, MGUS is a coincidence, bad arches causing foot pain, repeditive stress injury causing wrist pain, floaters as part of aging, etc.
Defining each one separately and overlaying a broad spectrum of "coincidence" is not a scientific way to approach an illness of systemic proportions. HIV cause cause this, Cancer can cause this -- a lot of diseases can cause this, many of which aren't or weren't well understood.
To assume they're all separate is foolish and ignorant.
quote: So why did I first notice floaters when all my other symptoms began? Anxiety over my feet?
A good question that likely was met with a "shrug." The fact is, that question is central to the investigation.
quote: Main symptoms now are floaters, pain in left wrist, hands and arm, occasionally in right hand and wrist, some nausea, tingling and mostly pain in right foot, sometimes left foot. Doc F. says there is rash on the back of my neck indicating an infection.
You sure do have a lot of symptoms indicative of tick-born infection. If Dr. F says you have it, I'm inclined to agree even though I don't know your entire history.
quote: And what about diet, if this is Lyme? Some say NO Carbs!
Diet is important, but it's not so wildly important that you have to go crazy changing things. Diet is best changed slowly and steadily over weeks and months, not overnight. Start simple. No candy, or Soda as an example. You can have treats if you like -- don't be inflexible and rigid, but be very conscious of your choices. Dr. Burrascano has a fine diet plan that I would advise. This will take a lot of the "confusion" out of the equation. Dr. Burrascano is -- in my opinion and likely most people's -- the best specialist in the world on Tick-borne disease treatment. I'd follow him before following any other patient or even my own doctor if he disagreed with Dr. B.
You can investigate Dr. B and see for yourself if you haven't already. He's no longer practicing but he's still active in advocacy, research and presenting the data via conferences.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Thanks again! You are very helpful.
Biggest problem now other than feet hurt when walking...feels like walkiing on rocks sometimes...is now other than the pain in my wrist, forearm and hand..is the swelling the hand and it turns purple. My hand specialist said he would give me a steroid or cortisone shot, but my Lyme doc F. says no way on the shots!....so I'll say no.
speaking of the pain in my wrist, I saw my rheumatologist today who noticed mt left hand was more red and almost purple plus I said it feels very full. She asked me to stop seeing the hand specialist and see a vascular surgeon. She thinks it is a blood flow problem. I don't even mention Lyme to her because she doesn't listen. Can Lyme cause this?
I keep thinking, is this Lyme? is this MGUS? Is this Psychosommatic? Dr. F. is confident it is Lyme based on it being endemic in our area. We are second in the country behind New York for Lyme cases. I keep mentioning psychosomatic and reading books by dr. Sarno (The Divided Mind, Mind Body Prescription). I am also starting Myofascial Release and Trigger point therapy which is expensive. If it is psychosomatic or realted in any way to tight muscles, etc this could help. What about Anxiety? so confusing. I am trying relaxation techniques.
I always wondered about the eye problem but seems odd that would be the only problem I had for 10 years!
Can Lyme cause this swelling in the hand or other limbs?
Feel I am going in so many directions. Have people telling me it is in my head.
My hand doctor had me with the wrist in a splint and it feels worse! Natural docs and chiros, etc say to leave it out and stretch, strengthen it, so I am now.
My mind is shot.
I did have a brain scan and MRI...only showed a small, minor aneurism. They were looking for MS.
Doc F. has no doubt the MGUS can be caused from the body fighting Lyme or another infection. docs at Penn in Philly say no. Of course they do, LOL. They say an infection would not cause that one para-protein (IgG) to spike. Dr. F says he would like to argue that with these guys. Lots of theories about MGUS linked with infection and also gluten.
Persistent swollen glands - not sure Sore throat - off and on Fevers - temperature drops Sore soles, esp. in the AM - Yep! can get worse through the day. Joint pain - yep. Fingers, toes - pain. Ankles, wrists - yep Knees, elbows - sore knees, sometimes. Hips, shoulders - shoulder was sore for no reason today, then went away. I get off sore joints and muscles. Joint swelling Ankles, wrists - wrist. Knees, elbows - knee Unexplained back pain - lots of back pain. Stiffness of the joints or back Muscle pain or cramps - yep! Obvious muscle weakness Twitching of the face or other - yep! muscles Confusion, difficulty thinking - maybe. some memory things. Difficulty with concentration, reading, problem absorbing - has been that way for a while. new information Word search, name block - yep! Forgetfulness, poor short term memory, poor attention - yep! Speech errors- wrong word,- yep. misspeaking - yep. Mood swings, irritability, - yep. depression - yep. Anxiety, panic attacks - yep. Psychosis (hallucinations, delusions, paranoia, bipolar) - sometimes I will thikn I see something moving on my desk or if there isa spot or dot in my vision, I thik I saw it crawl or move. Tremor - yep. Vision: double, blurry, - blurry, but this could be the neurontin. floaters - yep! Hearing: buzzing, ringing, - sometimes rining. Increased motion sickness, - yep! Off balance, ``tippy'' feeling - yep! Lightheadedness, wooziness, unavoidable need to sit or lie - sometimes. Tingling, numbness, burning or stabbing sensations, shooting pains - yep! Dental pain - yep! Neck creaks and cracks - yep, but I also started seeing a chiropractor and that is when the cracks started. Fatigue, tired, poor stamina - fatigue early on...not much now. Unexplained weight loss - yep. Pain in genital area - itchy. irregularity - yep. Loss of libido - a little. Queasy stomach or nausea - yep, mostly morning. Diarrhea - some days. Heart murmur or valve prolapse? - minor murmur and I also notice feels like my heart is going to beat out of my chest when lying in bed befor falling a sleep. Feels like it is beating so hard, it is moving my body. Chest wall pain or ribs sore - sometimes. Head congestion Breathlessness, ``air hunger'', unexplained chronic cough - for years like clearing my throat, but what about gluten? dairy? Symptom flares every 4 wks - I do get periodic flares but wasn't tracking time till now. No fatigue though, weird? I did have it at first.
so Dr. Burrascano has a fine diet plan??? I didn't see that. -Rich
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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My first symptom was my hand swelling up during my sleep. My fingers looked like sausages. It went away, but I definately have vascular problems from lyme.
My hands get a purple tinge to them and are very cold sometimes. Other times they are hot and sweaty. Also, migraines that come along with lyme could be due to a vascular problem. I never got headaches before lyme.
Posts: 418 | From NJ | Registered: Sep 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by amk33: My first symptom was my hand swelling up during my sleep. My fingers looked like sausages. It went away, but I definately have vascular problems from lyme.
My hands get a purple tinge to them and are very cold sometimes. Other times they are hot and sweaty. Also, migraines that come along with lyme could be due to a vascular problem. I never got headaches before lyme.
Were you clinically diagnosed? This would be easier if I did not have MGUS.
One thing I don't have is fatigue, although it was bad when I had a ton of symptoms in October and November.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Biggest problem now other than feet hurt when walking...feels like walkiing on rocks sometimes...is now other than the pain in my wrist, forearm and hand..is the swelling the hand and it turns purple. My hand specialist said he would give me a steroid or cortisone shot, but my Lyme doc F. says no way on the shots!....so I'll say no.
Smart move. Topical steroids wrapped around the hand overnight may be more acceptable to treat "only the hand.". High dose Hydrocortizone 25 mg. This is a "local" treatment rather than a treatment which could affect you systemically. Decreasing immunity systemically is dangerous. Internal local steroids are not appropriate unless extreme, and if necessary antibiotic therapy should be increased, dosage should be raised. Talk to Dr F about this. It's a controversial aspect of treating an inflammatory response like yours, but sometimes needed. Sometimes other antiinflammatories can be used.
quote: speaking of the pain in my wrist, I saw my rheumatologist today who noticed mt left hand was more red and almost purple plus I said it feels very full.
What type of antibiotics are you on?
quote: She asked me to stop seeing the hand specialist and see a vascular surgeon. She thinks it is a blood flow problem. I don't even mention Lyme to her because she doesn't listen. Can Lyme cause this?
Yes, it can. Lyme Disease has a significant impact on blood flow to the extremities and it is not uncommon to see swelling, and bluish tint to the skin. They also may be extremely cold and clammy at times.
quote: I keep thinking, is this Lyme? is this MGUS? Is this Psychosommatic?
It is not psychosomatic, that's clear. It could be another disease, as we're not devoted to one illness as human beings. Just because we get on disease like Lyme doesn't mean we can't also get Cancer, or AIDS/HIV. The point being, it's "probably" Lyme, but assuming isn't useful. Try to find a treatment for your worst symtpoms that "do not" interfere with your immune system systemically or with the Lyme Disease treatment.
quote: Dr. F. is confident it is Lyme based on it being endemic in our area. We are second in the country behind New York for Lyme cases.
I'm certain he's right. I've read your symptoms list. You most certainly have Lyme or a Lyme-like illness. I also suspect a co-infection based on your report. I can't definitively tell you which, but Bartonella would be an obvious candidate, but I'd check for others.
quote: I keep mentioning psychosomatic and reading books by dr. Sarno (The Divided Mind, Mind Body Prescription). I am also starting Myofascial Release and Trigger point therapy which is expensive. If it is psychosomatic or realted in any way to tight muscles, etc this could help. What about Anxiety? so confusing. I am trying relaxation techniques.
My opinion as an untrained, non health professional - is to study up on Lyme Disease and tick-born infection as well as the treatments available, but mainstream and alternative. I do not see a psychosomatic illness here. I see a systemica full blown infection, and or disease process. Tick borne infection is extremely likely. Save your money from treating these other expensive therapies and spend the money on testing extensively with Igenex and Fry. MDL might be of value. Dr. F can tell you more. All therapies aimed at relaxation, that are cheap, and effective for you, should be encouraged. Those "will" help a little.
Your anxiety is likely a symptom of your illness. Anxiety from circumstance can be present as well, but this is likely an infection.
quote: I always wondered about the eye problem but seems odd that would be the only problem I had for 10 years!
That's often how this disease works with a lot of people. Only one or two main symtoms appear before a cascade eventually appears. Some patients have no symptoms at all, and suddenly the infection comes out of dormancy. Remember, you may have had other symptoms and dismissed them, which is very easy to do with Lyme in that stage of being nearly asymptomatic.
quote: Can Lyme cause this swelling in the hand or other limbs?
It sure can, and it's common. It can cause swelling anywhere in the body that is susceptible to swelling. Glands, lymphnodes, brain, eyes, tongue, mouth, G.I. system -- stomach, intenstines rectum, joints, (Probably why your hand is swelling), it can also attack the kidneys, though this is less rare, the liver is more probable. The heart can be attacked, lungs, spleen, skin. I could go on, but you get the message.
quote: Feel I am going in so many directions. Have people telling me it is in my head.
They're wrong. Do you have a family history of violence, dysfunction, alcholism, drug addiction, or other extreme patterns? Were you sexually abused, abandoned, did anything tragic happen to you? Yup, I know psychology too -- big surprise. Tell me what you remember, up through the present until you fell ill. Anything that comes to mind is most valuable, don't "try" to think of them, just the ones that surface immediately are of importance to me.
quote: My hand doctor had me with the wrist in a splint and it feels worse! Natural docs and chiros, etc say to leave it out and stretch, strengthen it, so I am now.
I would continue using the arm. If it's in pain, it's ok to use some anti-inflammatories locally, as well as topical pain relievers. These can be made by your pharmacy probably. Dr. F can tell you more.
quote: My mind is shot.
I did have a brain scan and MRI...only showed a small, minor aneurism. They were looking for MS.
Beware. There is no such thing as a "minor aneurism" when it's "your" mind. Retest with a different physician to confirm a second opinion. Perform a Brain SPECT scan.
quote: Doc F. has no doubt the MGUS can be caused from the body fighting Lyme or another infection.
I agree.
quote: docs at Penn in Philly say no. Of course they do, LOL. They say an infection would not cause that one para-protein (IgG) to spike.
That's incorrect. With Lyme Disease, "any" particular protein or cellular structure or organ can change and or function abnormally. We are genetically predisposed to specific weaknesses, as well as the strain and type of infection or inflammatory response. These symptoms come out based on location of the infection in the body as well.
quote: Dr. F says he would like to argue that with these guys. Lots of theories about MGUS linked with infection and also gluten.
It would be an easy argument to win.
quote: Persistent swollen glands - not sure Sore throat - off and on Fevers - temperature drops Sore soles, esp. in the AM - Yep! can get worse through the day. [/qoute]
I'll take these piece by piece. "Not sure" means "likely" when swelling of other body parts has occured. The rest are typical of both Lyme, and Sore Soles is characteristic primarily of Bartonella infection. It can be caused by Lyme as well, but if it's intense or incredibly bothersome, it's often Bartonella. It's only one "red flag" though. Other things must be considered.
[quote] Joint pain - yep. Fingers, toes - pain. Ankles, wrists - yep Knees, elbows - sore knees, sometimes. Hips, shoulders - shoulder was sore for no reason today, then went away. I get off sore joints and muscles. Joint swelling
Classic Chronic Lyme. Do the joints pop and crack even when they don't hurt?
quote: Ankles, wrists - wrist. Knees, elbows - knee Unexplained back pain - lots of back pain. Stiffness of the joints or back Muscle pain or cramps - yep! Obvious muscle weakness Twitching of the face or other - yep! muscles
Classice Chronic Lyme
quote: Confusion, difficulty thinking - maybe. some memory things. Difficulty with concentration, reading, problem absorbing - has been that way for a while. new information Word search, name block - yep! Forgetfulness, poor short term memory, poor attention - yep! Speech errors- wrong word,- yep. misspeaking - yep. Mood swings, irritability, - yep. depression - yep. Anxiety, panic attacks - yep. Psychosis (hallucinations, delusions, paranoia, bipolar) - sometimes I will thikn I see something moving on my desk or if there isa spot or dot in my vision, I thik I saw it crawl or move.
Classic Lyme in the chronic form.
quote: Tremor - yep. Vision: double, blurry, - blurry, but this could be the neurontin. floaters - yep! Hearing: buzzing, ringing, - sometimes rining. Increased motion sickness, - yep! Off balance, ``tippy'' feeling - yep! Lightheadedness, wooziness, unavoidable need to sit or lie - sometimes.
I don't even have to go into detail all of these combined point to Chronic Lyme. However, investigation should occur over heavy metals, like mercury, as well as a few other diseases which mimic Chronic Lyme. Dr. F can tell you which. There is really no reason to waste time doing this without treatment though. Treatment should begin immediately. There is abundant evidence thus far to diagnosis Chronic Lyme. You've had this for more than a year, that I can tell thus far.
quote: Tingling, numbness, burning or stabbing sensations, shooting pains - yep! Dental pain - yep! Neck creaks and cracks - yep, but I also started seeing a chiropractor and that is when the cracks started.
They would have begun either way. The cracking.
quote: Fatigue, tired, poor stamina - fatigue early on...not much now. Unexplained weight loss - yep. Pain in genital area - itchy. irregularity - yep. Loss of libido - a little. Queasy stomach or nausea - yep, mostly morning. Diarrhea - some days. Heart murmur or valve prolapse? - minor murmur and I also notice feels like my heart is going to beat out of my chest when lying in bed befor falling a sleep. Feels like it is beating so hard, it is moving my body.
Those are called Heart Palpitations. You may also notice "skipping beats" more often. A minor murmur is probably that.
quote: Chest wall pain or ribs sore - sometimes. Head congestion Breathlessness, ``air hunger'', unexplained chronic cough - for years like clearing my throat, but what about gluten? dairy? Symptom flares every 4 wks - I do get periodic flares but wasn't tracking time till now.
Gluten or dairy could be a source, but if you look at the pattern in context, it's clear it's connected to the infection. It could be further instigated by an allergy.
quote: No fatigue though, weird? I did have it at first.
It can come and go.
quote: so Dr. Burrascano has a fine diet plan??? I didn't see that. -Rich
I'll quote all the parts that are necessary for you to see:
quote: If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example)
CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired. 2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps. 3. Absolutely no alcohol! 4. No smoking at all. 5. Aggressive exercises are required and should be initiated as soon as possible. 6. Diet must contain generous quantities of high quality protein and be high in fiber and low in fat and carbohydrates- no simple carbohydrates are allowed. Instead, use those with low glycemic index. 7. Certain key nutritional supplements should be added. 8. COMPLIANCE! NUTRITIONAL SUPPLEMENTS IN DISSEMINATED LYME DISEASE
Studies on patients with chronic illnesses such as Lyme and Chronic Fatigue have demonstrated that some ofthe late symptoms are related to cellular damage and deficiencies in certain essential nutrients. Double blinded, placebo controlled studies, and in one case direct assay of biopsy specimens have proven the value of some of the supplements listed. Some are required, while others are optional -see below. They are listed in order of importance. I have found that the quality of supplements used is often more important than the dose. In fact, I do not recommend ``mega doses''. Instead, seek out, if possible, pharmaceutical grade products, especially if USP certified. I recommend Pharmanex products because they fit these criteria. In the list below, it is indicated whether the products should be gotten from Pharmanex, or whether a different source, or even a generic substitute is OK. To order Pharmanex products, call 1-800-487-1000 and give the following U.S. reference number: 9256681-R.
BASIC DAILY REGIMEN (in order of importance)
PROBIOTICS (required when on antibiotics)
Essential to maintain the normal balance of intestinal flora; Acidophilus: the best kinds are frozen or refrigerated to ensure potency. Take two with each meal. Plan to mix together several different brands to broaden the spectrum. You can get acidophilus from most vitamin stores. An alternative that does not need refrigeration and can be taken only once a day is a high potency, patented product called ``Pro Bio'' from Pharmanex. In addition drink ``Kefir'', 2 to 4 ounces a day on occasion, and have 4 ounces of sugar-free yogurt daily if possible.
MULTI-VITAMIN (required)
I recommend the Life Pack family of multivitamins. These are unique supplements- pharmaceutical grade and USP certified, they are the only products clinically proven in double blinded, placebo controlled crossover studies to quench free radicals and raise antioxidant levels in the blood and lipids. Choose LifePak for males under 40, LifePak Women for hormonally active women, LifePak Prenatal when pregnant, and LifePak Prime for postmenopausal women and for men over 40. LifePak Teen is also available. They are available through Pharmanex. Continue long term. CO-Q10- required, but do not use while taking the prescription drug atovaquone (Mepron, Malarone). Deficiencies have been related to poor function of the heart, limitations of stamina, gum disease, and poor resistance to infections. Heart biopsy studies in Lyme patients indicated that they should take between 200 and 300mg daily of standard CoQ 10, or 120 mg (four caplets) of the well absorbed, highly purified, crystalline CoQ 10 product sold by Pharmanex, (surprisingly, the Pharmanex brand is less expensive than the generic!).
ALPHA LIPOIC ACID (required)
This facilitates entry of CoQ-10 into mitochondria. Dose is 300 mg twice daily. Generic is OK.
VITAMIN B (required).
Clinical studies demonstrated the need for supplement vitamin B in infections with Borrelia, to help clear neurological symptoms. Take one 50 mg B-complex capsule daily. If neuropathy is severe, an additional 50 mg of B-6 can be added. Generics are OK.
MAGNESIUM (required)
Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate (``Mag-tab SR'', sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on ``cal-mag'', calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary.
ESSENTIAL FATTY ACIDS: (required)
Studies show that when EFAs are taken regularly, statistically significant improvements in fatigue, aches weakness, vertigo, dizziness, memory, concentration and depression are likely. There are two broad classes: GLA (omega-6 oils) and EPA (omega-3 oils), derived respectively from plant and fish oils. This is what to take:
Plant Oil: Use a refrigerated product of mixed omega oils obtained from the local health food store. Take one to two tablespoons daily. May be mixed with food, put on salads, etc.
Fish Oil: Use ``Marine Omega'' by Pharmanex. Use four daily, taken on a full stomach (this brand is required). OPTIONAL SUPPLEMENTS FOR SPECIAL CIRCUMSTANCES
FOR NEUROLOGIC SYMPTOMS
ACETYL-L-CARNITINE- this is taken along with SAM-e. This combination can result in noticeable gains in short term memory, mood and cognition. The Acetyl Carnitine also is said to help heart and muscle function. Doses: Acetyl-L-carnitine- 1500-2000 mg daily on empty stomach. SAM-e- 400 mg daily with the acetyl carnitine. Available in most vitamin stores. Positive results may appear as early as 3 weeks; use for 2 to 3 months. May be repeated if needed; generics are okay.
METHYLCOBALAMIN (Methyl B12)
Methylcobalamin is a prescription drug derived from vitamin B12. This can help to heal problems with the central and peripheral nervous system, improve depressed immune function, and help to restore more normal sleeping patterns. Many patients note improved energy as well. Because the oral form is not absorbed when swallowed or dissolved under the tongue, Methyl B12 must be taken by injection. Dose is generally 25 mg. (1 c.c.) daily for 3 to 6 months. Long term studies have never demonstrated any side effects from this drug. However, the urine is expected to turn red shortly after each dose- if the urine is not red, a higher dose may be needed or the present supply may have lost potency. The injectable form of this is not available in regular drug stores. It must be manufactured (compounded) by specialty pharmacies on order.
FOR INCREASED ANTIOXIDANT LEVELS
GREEN TEA
Green, but not black tea contains some of the most potent antioxidants around (80-100 times more effective than vitamin C). At least four cups daily are needed to reap this benefit. I strongly suggest you get only caffeine-free tea. A nice alternative is ``TeGreen`` capsules by Pharmanex. They contain 97% pure tea polyphenols and each capsule is the equivalent of four to seven cups of decaffeinated green tea. Take one or two daily.
CORDYMAX
Cordyceps is a well-known herb from Tibet and has been shown in clinical studies to improve stamina, fatigue, and enhance lung and antioxidant function. It also raises superoxide dismutase levels, important to prevent lesions in the central nervous system. The positive effects can be dramatic; can be used long term. Available from Pharmanex as "CordyMax".
FOR IMMUNE SUPPORT
``REISHI MAX ``
This enhanced extract from cracked spores of the reishi mushroom has been shown in clinical studies to augment function of the Natural Killer Cells as well as macrophages. Recommended in all patients who have a CD-57 count below 60. Take four a day. Available only from Pharmanex.
FOR FATIGUE
Alpha Lipoic Acid, CordyMax, Co Q-10, Methylcobalamin
FOR JOINT SYMPTOMS
GLUCOSAMINE Can be of long term benefit to the joints. Do not be misled into buying a product that also contains chondroitin, as this chemical does not add anything, but it can make the product more expensive. Look for a product that contains the herb Boswellia serrata- this is a non-irritative anti-inflammatory. Although many generics exist, the Pharmanex product, "Cartilage Formula" has the right ingredients and is of proven efficacy. Expect improvement only over time (several weeks), but plan to use this indefinitely to maintain joint health.
VITAMIN C
If high doses are to be used, split them into several separate doses, and consider using ``Ester-C'' (non-acid and longer acting), or ``C-Salts'' (very well tolerated)
FLEX CREAM
An amazing liniment-like product that really works and has a money back guarantee. Use for any type of body pain- spread on a thick layer and do not rub in. Takes 30 to 60 minutes to work, then lasts many hours. A Pharmanex exclusive.
OTHER OPTIONAL SUPPLEMENTS
CREATINE Creatine has been shown to be of benefit in neuromuscular degenerative diseases such as Lou Gherig's Disease (ALS) and can be very helpful in supporting low blood pressure, as in NMH. It may also benefit strength, stamina, and heart function. Important: To use this safely, you must have an adequate fluid intake. The creatine product should contain taurine, an amino acid needed to enhance creatine absorption, plus some carbohydrate to aid creatine entry into muscle. You will need a 20 gram loading dose for the first five days, then 4 to 10 grams daily maintenance. Try "Cell Tech" from the Vitamin Shop, and follow label directions.
MILK THISTLE (optional)
Useful to support liver function. Take 175 mg daily- use an 80% Silymarin extract. Available from many vitamin stores.
MANAGING YEAST OVERGROWTH
Many patients with weakened defenses, such as from chronic illnesses, including Lyme Disease, develop an overgrowth of yeast. This begins in the mouth and then spreads to the intestinal tract. Therefore the primary line of defense is careful oral hygiene, replenishing the beneficial bacteria by daily intake of yogurt, Kefir, and/or acidophilus, and by following a strict low carbohydrate diet.
YEAST CONTROL DIET- restricted carbohydrate regimen
UNRESTRICTED FOODS
All protein foods, such as meat, fish, fowl, cheese, eggs, dairy, tofu
RESTRICTED FOODS
FRUITS Fruits may be a problem because they contain a large amount of sugars. However, if the fruit contains a lot of fiber, this may make up for the sugars to some degree. Thus: * Fruits are only allowed at the end of a meal, and never on an empty stomach * Only high fiber fruits are allowed * Only very small amounts! EXAMPLES:
ALLOWED IN GENEROUS AMOUNTS
Grapefruit, lemons, limes, tomatoes, avocado ALLOWED IN SMALL AMOUNTS ONLY! (The high fiber content in these hard, crunchy fruits partially makes up for the carbohydrates) Pears, apples, strawberries, cantaloupe, etc. NOT ALLOWED (These soft fruits do not have enough fiber) Oranges, watermelons, bananas, grapes, etc. No fruit juices either!
VEGETABLES
Green vegetables and salads are O.K. Avoid or limit starchy vegetables (potato, rice, beans, etc.) and avoid pasta. STARCHES
None!! If it is made from flour- any kind of flour- it is not allowed. (No breads, cereals, cake, etc.)
SWEETENERS
NOT ALLOWED
No sugars at all, and no fructose or corn syrup ALLOWED (if tolerated) Stevia (safest), honey, and Splenda, Aspartame (NutraSweet, Equal) may not be tolerated by some patients Saccharin products are not recommended DRINKS
ALLOWED
Water, seltzer, caffeine-free diet sodas, coffee and tea without sugar or caffeine, vegetable juices NOT ALLOWED
Fruit juices, regular sodas, and any drinks sweetened with sugars or syrups No Alcohol at all
OTHERS
Do not skip any meals. At least three regular meals daily are needed; a better option is to eat very small portions but have between meal snacks to maintain blood sugar and insulin levels. Bedtime snacks, if taken, must be totally carbohydrate free!
All dietary information comes from Dr. Burrascano's Guidelines.
Last Note: The guidelines aren't meant to be followed to the T by every single patient. If you make changes to your diet, base it off the "Yeast" diet, as this is a healthy diet for anyone to follow. Small changes is really all that is necessary. Clear the "major" stuff that he says "Absolutely No" to -- if you begin making changes.
A mediteranian style of eating is appropriate. Fish, vegetables, you get the point.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Blue,
I want to get a good book on lyme, like the Lyme Solution.
I read the Burrascano info linked from this site, but what you gave me is way more in depth! I'll have to find that on line!
I feel my biggest problems are the floaters which I notice less now, the pain in the arm, wrist and hand and the pain, tingling in my feet....much worse after a long walk.
I am only seeing Dr. F now because money is tight and most docs are expensive. He only has me doing minor diet mods and the Fluconazole. We are going to talk about antibiotics at my next appointment in June.
Fatigue really isn't bad for me. Is that really weird!? I know everyone complains of that!
I saw the vascular surgeon today and he said my circulation is fine but wants me to see an endocrinologist for a thyroid workup. I know Dr. F. is already doing that. The hand doc will send me for PT I know but I just want to go back to using my hand and doing things as longas I don't hurt it. I was even told it was repetitive stress!
The diet is tough because I have been vegetarian for years and i know what my system is like with meat. I get constipated.
Oil, such as olive oil and canola is interesting because I know they can supress the immune system so I avoid all oil other than Carlson's Fish Oil(no mercury). I also do ground flax seeds.
I hear a lot about avoiding vinegar and mushrooms, due to one being a fungus and one creating an acidic environment.
Problem is I eat a lot of brown rice, buckwheat, millet, etc. I am avoiding gluten.
I don't do yogurt but get plenty of prebiotics with plant food.
I thought ALL coffee was bad due to the acidic nature??? I thought it was the acid in additon to the caffeine.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I can't read all that text up there, but I did catch that you were looking at a LLMD in Lancaster PA.
If you are also still having Eye symptoms that you think you need an Opthalmologist for, PM me and I'll send you the name of a LLMD Opthalmologist in lancaster, PA. I have my 1st appointment with him in 2 weeks, but he came highly recommended.
Posts: 168 | From Delaware | Registered: Aug 2005
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Per your original message, how much diflucan did he put you on? I just started yesterday on 100 mg. Afew months ago I took it for a week and seemed to notice a difference in how I felt. But you still need antibiotics.
I have an appoint. with Dr. H in Hyde Park on Aug 5th. Been going to Manhattan for CFS, but then when he found I had Lyme I knew it was time for a change. Not treating my Lyme properly at all.
Linda
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
Haven't logged on for a coon's age, so I'm glad I happened to see this conversation when I did today. Just wanted Richedie to know that I saw Dr. F. once in January, but for some of the reasons already referred to here, decided against continuing with him. You can send me a PM if you'd like to continue emailing about that. I now fly to Philadelphia and drive about an hour and a half each way to see Dr. S. in Howell, NJ. Someone with the Southeastern PA Lyme Disease Support Group recommended him., and Derek checked out his network in NJ and got a favorable response about him. I've seen him three times since Feb. He drew blood right there in his office and sent it out right away to three different labs, hoping to get a positive result for Lyme and other co-infections.. (I've never had a positive test, and none of these came back definitive either.) He also is a certified acupuncturist who uses some "energy techniques," for lack of a better term, for diagnostic and treatment purposes. I seem to respond really immediately when he does his "magic" in the office, but then the effect subsides. I'm sticking with him now, even though it's such a hassle getting there, because of how others have raved about him,, including his office staff who are so knowledgeable and encouraging when I come. They always give me hope, because they've seen so many people come through who've been healed.
Don't know if you've already decided whether to see someone else besides Dr. F. and if so, selected someone. But you might want to try Dr. S. He's been treating Lyme for over ten years now, and seems very committed.
posted
I can reinforce some of what FriendPAM said about Dr. S.
However, I have chronic Lyme of maybe 2 decades and relapsed. I recently left his office because he was unable to find the right combination of drugs to improve my situation in the 1.5 years that I saw him, and he doesn't take insurance (though his fees are very reasonable). I know he's great for some patients, but it depends on the situation you are in.
Good luck.
Posts: 168 | From Delaware | Registered: Aug 2005
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richedie
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posted
Thanks everyone!
Metallic Blue, in my last post I forgot to ask if Lyme can cause blue, painful hands? My left hand has become blueish in color! It was mentioned Thoracic Outlet Syndrome.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
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posted
quote:Originally posted by djf2005: dr f is a nice guy and will give you fluconazole until the cows come home
however, as far as guiding your tx, he is not someone id rely on unless you cannot afford a good ilads dr.
i saw and see dr f, but not as my primary llmd.
he is a good guy, very good, but if you have a serious case of lyme (which i dont know if you do)
then id suggest getting to a good llmd and getting good tx.
dont waste your time, it does take time to recover and getting on the right tx is imperative.
im 18 months in and still very sick..
i wasted 3 months on diflucan
hope he either puts you on a good abx combo or some other llmd does soon.
DR RH in hyde park is really the best, also, rhinbeckhealth has some good lyme docs.
its all about how much u can afford.
dont worry tho, dr f will do his best and who knows, maybe hell get u better.
i have a few friends who see dr f, and he did get my parents well, altho they were not nearly as sick.
take care, if i can help, PM me.
derek
Derek,
What is considered not nearly as sick? I don't know how sick I am! People don't even know I have symptoms because I hide it. I lost weight but could be stress and diet change, but also floaters, pain in hand, wrist and arm, plus the pai and tingling in the soles of my feet. I do get muscle twitching, etc and when this all starte I had some really scary symptoms. maybe some is stress, I don't know! How sick wer/are you in comparison? Your parents, were they better than me?
Should I ride out Dr. F's treatment longer?
I made an appointment with Dr. S. in New Jersey.
I am afraid I'll spend all that cash to only have negative blood tests and no luck from abx.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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cantgiveupyet
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posted
Im glad that you made an appt with Dr S.
Its good to get another opinion.
I saw him for awhile, but like someone said above was just too sick for him to treat. My immune system was trashed.
He did put me on difflucan and that was one of my turning points, allowed me to drive again.
Let me know how the appt goes.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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richedie
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posted
So Dr. S is not for the very sick? How do I know how sick I am? What constitutes too sick?
Should I hang in there for a while longer with Dr. F??? He just has me on fluconazole till I see him again and then I was going to ask for abx. I don't know if he would do enough to get me well if I do indeed have Lyme. Ugh!
I can't quite afford Dr. L or S in maryland or I would!
I just feel like, if this is Lyme, I can't waste time. If Dr. F can get me well....I am wasting money elsewhere. So confused..
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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cantgiveupyet
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posted
I didnt mean Dr S wasnt for the sick, just that my situation was different....my body was gone and i really think close to death at one point. Sorry for any confusion.
For your situation I would see Dr S. IMHO you need another opinion and antibiotics. I dont know many to recover with just Difflucan.(not knocking Dr F) its just some patients need more.
I really think you are doing the right thing seeing Dr S.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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tailz
Unregistered
posted
Dr. S in Chadds Ford is not a true LLMD. I saw him, and yeah, he'll treat you for what you are positive for as long as you show you are positive for it and he gets paid, but he ha-ha's IGeneX. That tells me he's into keeping the insurance companies happy, and he lost my respect right there already.
He told me that he is involved in the guidelines somehow - I forget how he explained it - but he had something to do with reviewing how a positive and a negative Lyme were determined.
Then when a situation arose between me and Dr. F and I needed him, Dr. S dumped me like a lump of lard.
quote:Originally posted by amk33: My first symptom was my hand swelling up during my sleep. My fingers looked like sausages. It went away, but I definately have vascular problems from lyme.
My hands get a purple tinge to them and are very cold sometimes. Other times they are hot and sweaty. Also, migraines that come along with lyme could be due to a vascular problem. I never got headaches before lyme.
Were you clinically diagnosed? This would be easier if I did not have MGUS.
One thing I don't have is fatigue, although it was bad when I had a ton of symptoms in October and November.
-------------------------------------------------- I was diagnosed with a positive WB from Igenex. I have since tested positive on the antigen test from Central Florida Research.
I had all the symptoms you mentioned come on pretty much at the same time in the beginning of my illness.
I used to see Dr. S. in Howell, and would recommend him. He didn't do IV's at the time when I saw him, so I switched Dr.'s to someone who did, and who is closer to me. IV's didn't do much for me, however.
I'm still sick after 8 years of on and off treatment. Am now considering Rife.
Posts: 418 | From NJ | Registered: Sep 2007
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cantgiveupyet
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posted
tailz- this is dr S in NJ, not PA. I agree with your opinion on dr S in PA.
Its tough in this area finding a good LLMD!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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METALLlC BLUE
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posted
Rich, to answer you question. Yes, it can cause poor circulation, thus leading to the "blue hands."
Are any of you in need of good doctors? Surprisingly PA, VA, MD, and NJ have the most LLMD per state than any other in the country! There are some very good ones.
E-mail me at [email protected] and I'll give you a lot of good names for your area.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
richedie
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posted
Well, I can't find any ones I would go to in SE PA.
I got the appointment with Dr. S. I just worry with all these horror stories I hear, I should have gone to the best like L or S in Maryland or H in New York.
I may call Dr L and Dr S today to get information.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
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posted
My parents called my wife and i last night and told me to see the best doctor I could find outside of PA. They know I have an appoinment to see Dr. S in Jersey but they are willing to help if I go to Maryland to see Dr. L for example. I don't know how far into New York Dr. H and Dr. B are located. Another doc I thought of is dr. E in NY. I wish I could cisit all of them to see who would be best for me.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I live/work in PA (outside of Philly) and made an appt. with Dr. S in MD. Its prob only an 1:30 drive for me from Oaks PA where I work.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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richedie
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quote:Originally posted by mrpotto: I live/work in PA (outside of Philly) and made an appt. with Dr. S in MD. Its prob only an 1:30 drive for me from Oaks PA where I work.
I am not far from Oaks...
do you mean THE Dr. S in Baltimore as in the guy who wrote that book? I tried and could not get an appointment, no new patients. I have one with Dr. S in Jersey but am considering Dr. E in NJ or Dr. L in Baltimore.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Yes the author of the book located in Towson, Md.
Actually just mapquested and its around a 2 hour drive which still isn't bad.
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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richedie
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posted
When did you make your appointment? I called today and said he is not taking any! Do you know anything about Dr. L in MD? She is also highly recommended. I may go that route rather than the Jersey docs. It is so confusing, isn't it?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I called last week and had to submit my story to them in writing to be considered.
The appt. was made today.
I've heard Dr. L is good and studied under Dr. S and "the" Dr. B.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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richedie
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posted
Wonder why they said no new patients then? Did you say something special to get them to ask for a story??
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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cantgiveupyet
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wow i was in towson last weekend. its not a bad drive just tolls are costly.. I was coming from the south on up..but the drive from Towson to PA wasnt so bad, Maryland drivers are crazy though on the beltway!!!
I was right outside towson university.
Its just north of baltimore. I will have to PM you later tonite Chris, to see how close i was too him and fees etc.
if your parents are going to pay, i would do extensive research, and find the best. I will PM you as well later tonite. Have to catch up on my PM's ;-)
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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djf2005
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posted
dr h and b in NY are about a 3 hr drive from our area. they are worth the drive and money
preferably dr h. hes in hyde park
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Rich, please go back a few posts up from this and remove the names of doctors you put in them. i actually think there were named in two separate posts.
we NEVER post names of our llmd's, just last initial and state.
good luck. sometimes you have to wait to get in to the good ones.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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richedie
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posted
Metallic Blue, who makes the Flex Cream? Is it available at most pharmacies? I'll look for it. I also came across some Fibromyalsia creams.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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METALLlC BLUE
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No idea. But again I have a huge list of physicians around those areas you're looking at. Making mention of it one more time.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by METALLlC BLUE: No idea. But again I have a huge list of physicians around those areas you're looking at. Making mention of it one more time.
You mentioned Flex Cream in your post that is why I mentioned. Your mailbox is full!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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