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#1 DanC33

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Posted 10 October 2013 - 09:06 AM

 Hello, I was recently diagnosed with atypical PD with dopamine responsive tremor. I also have SLE. (Lupus) I was curious about a proper diet with the two problems? With Lupus it was recommended a high protein/low carb diet, but it's my understanding that with Sinemet protein should be limited. Any advice would be appreciated.   



#2 Kathrynne Holden, MS

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Posted 11 October 2013 - 06:42 PM

Dan, I don’t know who recommended a high protein diet for SLE, but I am not aware of any role for such a plan. Unless you have lost significant weight and/or muscle mass, I don’t know of any reason to follow a high-protein/low carb diet. Rather, I would focus on fruits, vegetables, omega-3 fatty acids for their antioxidant and antiinflammatory components, while avoiding or minimizing highly processed foods. This, fortunately, is an excellent plan for PD as well.

Here are some further comments:

- Rule out celiac disease if this has not already been done, as there is a strong association between CD and SLE

- If serum 25(OH)D3 levels (vitamin D) have not been checked, I would ask that this test be conducted as soon as possible, as low/deficient vitamin D is prevalent in both people with Parkinson’s disease and those with SLE. When deficient, supplementation has produced modest but significant improvement in symptoms.

- Consider several servings of fatty fish weekly; if you are averse to fish, then fish oil capsules can be taken daily.

- There is some indication that vitamin E may provide antiinflammatory help in SLE; consider a supplement with the spectrum of tocopherols and tocotrienols.

- Avoid sprouts, such as alfalfa and bean sprouts; in some people with SLE they can cause an inflammatory reaction.

Regarding diet for PD with levodopa, when you first start taking levodopa it may cause nausea. If so, take it with meals initially. Most people adapt to its effects within a few weeks, and often can continue taking it with meals for some time. But if symptoms are not well controlled, then take the Sinemet about 30 minutes before meals, so that it is absorbed into the bloodstream well ahead of the protein in the meal.

I hope this is helpful information for you, but if not, or if you have further questions, do post again; I will help if I can.


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#3 DanC33

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Posted 12 October 2013 - 01:42 PM

Dan, I don’t know who recommended a high protein diet for SLE, but I am not aware of any role for such a plan. Unless you have lost significant weight and/or muscle mass, I don’t know of any reason to follow a high-protein/low carb diet. Rather, I would focus on fruits, vegetables, omega-3 fatty acids for their antioxidant and antiinflammatory components, while avoiding or minimizing highly processed foods. This, fortunately, is an excellent plan for PD as well.

Here are some further comments:

- Rule out celiac disease if this has not already been done, as there is a strong association between CD and SLE

- If serum 25(OH)D3 levels (vitamin D) have not been checked, I would ask that this test be conducted as soon as possible, as low/deficient vitamin D is prevalent in both people with Parkinson’s disease and those with SLE. When deficient, supplementation has produced modest but significant improvement in symptoms.

- Consider several servings of fatty fish weekly; if you are averse to fish, then fish oil capsules can be taken daily.

- There is some indication that vitamin E may provide antiinflammatory help in SLE; consider a supplement with the spectrum of tocopherols and tocotrienols.

- Avoid sprouts, such as alfalfa and bean sprouts; in some people with SLE they can cause an inflammatory reaction.

Regarding diet for PD with levodopa, when you first start taking levodopa it may cause nausea. If so, take it with meals initially. Most people adapt to its effects within a few weeks, and often can continue taking it with meals for some time. But if symptoms are not well controlled, then take the Sinemet about 30 minutes before meals, so that it is absorbed into the bloodstream well ahead of the protein in the meal.

I hope this is helpful information for you, but if not, or if you have further questions, do post again; I will help if I can.

I have had quite a bit of muscle mass lost, along with significant weight loss (over 75lbs) in the last 3 months. Their not sure if it is SLE or PD causing it. So I think that is why the diet.



#4 Kathrynne Holden, MS

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Posted 13 October 2013 - 05:52 PM

This changes things entirely, and I'm glad you asked about diet. A weight loss of more than 75 lbs in 3 months is highly significant, and requires immediate attention. In fact, I believe it should supercede the PD needs temporarily, until you regain some weight. However, it will require one-on-one counseling with a registered dietitian who can access your medical records and assess your calorie and protein needs. This will be based upon your usual adult body weight, and your current weight. You will almost certainly require at least 1.5 grams protein per kg body weight, and likely more.

 

Please ask your physician to refer you to a registered dietitian. Then tell the RD that s/he can contact me via this forum for help regarding PD-specific concerns, such as protein-levodopa interactions. The RD will be able to help you plan meals that help to rebuild weight and muscle, but still include the antioxidants needed to help with SLE. Please do ask that celiac disease be ruled out -- it can occur with both PD and SLE, and can be masked by either one. Also, please be certain your physician has tested your serum vitamin D level, you could be deficient.

 

Meantime, if you are experiencing nausea with use of Sinemet, take it with meals; the nausea will usually go away in 2-3 weeks. Then, if your PD symptoms are under control, you can continue to take it with meals. If, however, the tremor is present, then take the Sinemet about 30 minutes before meals, so that it can reach the bloodstream ahead of the protein in your meal. Begin to include high-quality protein in each meal, such as eggs at breakfast, fish several times a week, chicken or turkey, and lean beef. Without your medical records, I can't be more specific, but will gladly assist your doctor and RD in nutritional concerns. Let me know how you're doing.


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#5 DanC33

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Posted 17 October 2013 - 04:31 PM

This changes things entirely, and I'm glad you asked about diet. A weight loss of more than 75 lbs in 3 months is highly significant, and requires immediate attention. In fact, I believe it should supercede the PD needs temporarily, until you regain some weight. However, it will require one-on-one counseling with a registered dietitian who can access your medical records and assess your calorie and protein needs. This will be based upon your usual adult body weight, and your current weight. You will almost certainly require at least 1.5 grams protein per kg body weight, and likely more.

 

Please ask your physician to refer you to a registered dietitian. Then tell the RD that s/he can contact me via this forum for help regarding PD-specific concerns, such as protein-levodopa interactions. The RD will be able to help you plan meals that help to rebuild weight and muscle, but still include the antioxidants needed to help with SLE. Please do ask that celiac disease be ruled out -- it can occur with both PD and SLE, and can be masked by either one. Also, please be certain your physician has tested your serum vitamin D level, you could be deficient.

 

Meantime, if you are experiencing nausea with use of Sinemet, take it with meals; the nausea will usually go away in 2-3 weeks. Then, if your PD symptoms are under control, you can continue to take it with meals. If, however, the tremor is present, then take the Sinemet about 30 minutes before meals, so that it can reach the bloodstream ahead of the protein in your meal. Begin to include high-quality protein in each meal, such as eggs at breakfast, fish several times a week, chicken or turkey, and lean beef. Without your medical records, I can't be more specific, but will gladly assist your doctor and RD in nutritional concerns. Let me know how you're doing.

I will talk to my doctor about this, even though the weight loss seems to have leveled off for now. What seems to be the most puzzling is that I am on Medrol and lost all that weight. I gained most of that weight because of being on steroids on and off for the last 3 years.   Thanks so much.



#6 Kathrynne Holden, MS

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Posted 18 October 2013 - 05:06 PM

I'm somewhat surprised, too, that you lost weight while using a corticosteroid, it is often the other way around. It's good that weight loss has leveled off, though, and I hope to hear soon that you have talked with a registered dietitian and are eating nourishing meals. Let me know how you are doing, or if I can answer other questions.


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#7 DanC33

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Posted 24 November 2013 - 12:06 PM

Hello sorry it's been a while since I posted anything. Unfortunately I live in a very small town in Nevada so I am having a hard time finding a RD in my area that takes Medicaid. So if you don't mind I thought I talk to you.

 

 I am still losing weight(now almost 100llbs) but it has slowed down considerably since starting Sinemet 25/100. I take it 4x daily and it's going up to 5x. I am still taking 12mg of Medrol along with Methyltrexate 17.5mg and a whole host of other drugs/supplements. (I can give you the entire list if you would like but it's very long) I also just had an EMG/NCS and they found that my nerves are OK but I have very weak muscles with "foot drop". (my rheumatologist thinks that I also may have Dermatomyositis or worse CNS Lupus on top of everything else)  

 

 I would appreciate any diet/lifestyle advice you could give until I can find an RD that will work with me.  I have been trying to force myself to eat more but I have almost no appetite but when I do eat I try to eat higher calorie/fat options so I can head off any more weight loss. I did have a calorie count done on me while at UCSF for a week and they said that I eat less than 1000 calories a day(some days only 600)  I have went from almost 300llbs(steroid induced) to 200llbs in just a few months and still losing.   



#8 Kathrynne Holden, MS

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Posted 26 November 2013 - 06:51 PM

Dan, I will do what I can, but I must tell you that it will be very limited. The dietitian must work with your doctors, have access to your medical records, lab results, a complete list of medications you take, and  much more. But I will comment as well as I can:

 

1) Your appetite loss should be among the first things considered. I'm very glad the hospital ordered a calorie count, that is helpful. Intake of 600-1000 calories a day is far too little, and explains why you lose weight despite taking Medrol. Your doctor needs to address this without delay, perhaps ordering an appetite stimulant. It is also possible that depression could be the problem -- it is not uncommon among people with PD and often leads to appetite loss. Please speak to your doctor about this.

 

2) You're doing the right thing in choosing higher-calorie foods. Next, you need to consider protein. You require at least 1 gram protein per pound of body weight per day (about 7 ounces), to restore lost muscle mass and repair cells, hair, skin and nails. If you cannot manage this much, then focus on very high-quality protein, and try to eat as much as possible -- egg, cheese, meat, poultry, or fish, whatever is most appealing..

 

I would divide this amount about equally among morning, midday, and evening snacks, taking levodopa about 30 minutes before the meals. This will make it a bit easier to time protein and levodopa. These do not need to be full meals -- it's better to make them small high-protein "snacks." For example, some scrambled eggs in the morning; a can of tuna or salmon at midday; some slices of roast beef or turkey in the evening -- whatever foods sound the best to you.

 

Then, in between these meals, eat several small non-protein snacks of fruit, vegetables, cereal, bread, smoothies, that will not interfere with your Sinemet. For example, a small bowl of cereal with Rice Dream milk alternative, then later half an apple, later on 4-6 ounces of fruit juice, then later a half-cup of cooked vegetable of your choice. This will provide the extra calories you need to maintain weight.

 

As I said previously, focus on fruits, vegetables, omega-3 fatty acids for their antioxidant and anti-inflammatory components, while avoiding or minimizing highly processed foods. This will benefit SLE and PD as well.
 

If you care to provide more data, I might be able to give a fuller response:
- age

- usual, healthy adult body weight (before weight gain due to Medrol)
- the names of all medications used (both for PD, and other medications, including over-the-counter medications, vitamins, herbal or other supplements)
- any other diagnosed conditions (such as elevated blood pressure, food allergies, diabetes, high cholesterol, etc.)
- any other concerns such as nausea, edema, weight changes, constipation, sadness, etc.
- do you have a spouse, family member or friend who can help with meal planning, take notes at the doctor's office, etc.?

- has your doctor checked your serum 25(OH)D3 levels (vitamin D), to rule out deficiency?

- has your doctor ruled out celiac disease?

 

I hope this will be helpful for you, and I very much hope you can reach an RD who can work with you personally; this is very important for your health.


 


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#9 DanC33

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Posted 07 December 2013 - 10:01 AM

Is there a way I can send you the info you need? I have my entire medical history and list of meds on my computer but I can't figure out how to either upload it here or send it to you.



#10 Kathrynne Holden, MS

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Posted 09 December 2013 - 06:49 PM

Dan, unfortunately the format of the forum doesn't have a way to upload data. So, in the absence of other information, I recommend:

 

Focus on protein foods, three times daily, taking Sinemet about 30 minutes before each "mini-meal." Eat as much as you can of eggs, fish, poultry, and/or meat; these are all valuable high-quality protein foods. Try your best to eat as much as possible of these, but nothing else, three times daily -- morning, midday, and evening. The protein will help to rebuild muscle that is lost with excessive weight loss.

 

In between these eat "mini-meals" of NON-PROTEIN foods -- fruits, vegetables, whole-grain bread or cereal. These foods won't interfere with your Sinemet. Again, these are not "full meals" -- more like substantial snacks, taken in between the protein mini-meals. The vegetables and fruits are rich in antioxidants which will benefit both lupus and atypical PD. They will also add extra calories so that the protein you eat won't be burned for fuel, but will be used to rebuild muscle.

 

I would not eat too much fatty food; fat stays in the stomach for a very long time, and keeps you feeling full, so that you won't want to eat. Use butter, mayonnaise, and oils lightly, so that you can make the most of your limited appetite. I don't know at what times you will be taking your Sinemet, but as an example (protein meals are colored blue, the Sinemet is red):

 

7:00 am - Sinemet

7:30 AM - 2 scrambled eggs

8:30 AM - a slice of lightly buttered whole-wheat toast, with a glass of orange juice

9:00 - Sinemet

9:30 AM - apple slices

10:30 AM - a banana

11:30 AM - Sinemet

12:00 noon - 1 cup tuna salad or 4-5 ounces baked salmon

1:00 PM -  a small baked sweet potato

2:00 PM - 1/2 cup carrot and celery sticks

3:00 PM - 2 or 3 whole-grain crackers with 2 tablespoons peanut butter

4:30 PM - Sinemet

5:00 PM - 4-6 ounces roast beef or turkey

6:00 PM - vegetable juice and 1/2 cup cooked green beans or broccoli

7:00 PM - 1/2 cup mashed potatoes

8:00 PM - Sinemet

9:00 PM - whole grain crackers with 2 ounces cheese, fruit or vegetable juice

 

I know this is difficult when your appetite is poor; I know, too, you are doing your best, and want to stay as healthy as possible. So please try to adapt this example to your favorite foods, making sure to take your Sinemet 30 minutes before the protein meals.

 

Also, if you could respond to a few questions (I'll leave out the medications and supplements, and the other diagnosed conditions) it would help greatly:

 

- age

- usual, healthy adult body weight (before weight gain due to Medrol)
- do you have a spouse, family member or friend who can help with meal planning, take notes at the doctor's office, etc.?

 

Dan, I hope this helpful for you, and wish I could help more.

 

 


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#11 DanC33

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Posted 10 December 2013 - 10:26 AM

I am 45, 5'11"  healthy weight was 175llbs.  I always take someone with me to see the doctors because my short term memory is shot also because in my state if you've ever had a seizure they take your license away.  My wife has become my home care nurse so I will have her go over you're meal plan for me and adjust my meals accordingly.

 

 Thank you SOOO much for all your help and advice.



#12 Kathrynne Holden, MS

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Posted 13 December 2013 - 06:03 PM

That does help; it appears you are close to your former healthy weight. The weight loss is not bad in and of itself, but the loss of appetite is very important since it has led to the weight loss. It's also extremely helpful that your wife is there to assist with meal planning.

 

It is my hope that you will be able to eat three small protein-rich meals, with small, frequent mini-meals of vegetables and fruits, and that use of nourishing foods will help to restore your health, and perhaps improve your appetite. A small bowl of vegetable-beef stew at midday, for example; then later a serving of broccoli or Brussels sprouts tossed with lemon juice and melted cheese. In the evening, a turkey sandwich (or just a half sandwish if you cannot manage a whole one), then later a serving of corn or sweet potato. Just examples.

 

If you or your wife have other questions, please ask; I will help if I can.


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#13 DanC33

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Posted 28 January 2014 - 08:37 AM

Just thought I'd give you an update. I have been using your plan and it seems to be working as my weight loss has slowed. I now hover at 180 from over 300. I still don't have much of an appetite but my wife stays on top of my diet/pill regimen. I do have some constipation issues, my local PCP has added Colace twice daily to help. I'm also still taking 12mg of Medrol. Some things that have changed is that I can't much(maybe 1/2 cup) drink coffee or other caffeinated beverages they make me very nauseated. I also can't have anything with corn in it, high fructose corn syrup is the worst(it makes me vomit) but anything corn based(corn chips, whole corn, ect..) it all makes me sick. The only exception is corn from my father in laws garden. It is fully organic non GMO and zero pesticides. I have the exact same problem with wheat as well. So if it comes from a box, bag or can I generally won't eat it, that includes most fast food restaurants.



#14 Kathrynne Holden, MS

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Posted 31 January 2014 - 06:09 PM

Thanks, DanC, again this information is really helpful. It's good to know that the weight loss has slowed (and hopefully stopped).

 

Regarding your symptoms, it's hard to tell what to attribute to SLE, and what is likely due to PD, but for some reason apparently you have become sensitized to caffeine, GMO corn, and wheat -- or possibly gluten. Food sensitivities and allergies can occur at any age, and often occur in adulthood and even old age. It is also quite possible that the nausea is in part due to the Sinemet and Medrol, it is a possible side effect of both.

 

I strongly recommend you ask your doctor to refer you for allergy testing, and testing for celiac disease. As I mentioned previously, the doctor should rule out celiac disease, as there is a strong association between CD and SLE. Gluten, which is found in many products besides foods, can worsen all your symptoms, possibly influencing your appetite as well.

 

Regarding constipation, please ask your doctor about Miralax, a laxative especially designed for those with slowed peristalsis as is often the case with PD. You still need plenty of fluids and fiber, but the Miralax usually is effective.

 

Congratulations to your wife on maintaining your balance of food and medications, this isn't easy, and she is doing a great job. Especially with the limitations imposed by no caffeine, GMO corn, or wheat. This is a real challenge and I very much appreciate her hard work. If I can help further, please let me know.


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#15 DanC33

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Posted 30 March 2014 - 09:44 AM

I thought I would give you an update.( I still haven't found an RD in my area) My weight loss seems to have finally stopped. I have been at 175llbs for a month with only minor fluctuations. I still have no appetite, but my wife monitors my weight and makes adjustments when I need to eat more. I also have almost no sense of smell and I seem to be losing my sense of taste. I can only really taste strong flavors.( super spicy/sour/salty/sweet) So we have tailored my diet to include some of these.  Can this be a contributing factor to my loss of appetite?  

 

 Thanks for your help



#16 Kathrynne Holden, MS

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Posted 01 April 2014 - 05:36 PM

Thanks for the update, Dan. I'm delighted to know your weight has stabilized at last, and your wife deserves enormous credit for that -- and a medal!

 

You have put your finger on the problem. Loss of the sense of smell is almost universal in PD; and, because we must smell food in order to taste it, the sense of taste diminishes as well. Many folks lose their appetite, and gradually eat less and less. You and your wife are doing exactly the right thing -- focus on foods you enjoy most, so that you can maintain your present weight.

 

Keep up the great work, and let me know if I can answer other questions; and please continue to update us on your progress.


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#17 Appala

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Posted 09 April 2014 - 08:25 PM

I'm interested in your comments on lupus. I have Parkinson's, not lupus, but my 20 y.o. daughter (adopted) has a birth family history of lupus, some possible symptoms, but not full blown lupus yet. Her 23andMe genetic tests showed a higher lupus risk, plus higher risk (or carrier status?) for hemochromatosis. She's very thin, has little appetite, moody, and seems to get sick easily. To my surprise, she recently asked me to find her recommendations for vitamins, supplements, and nutrition. I know this isn't Parkinson's related, but would like to help her and would greatly appreciate any suggestions you might be able to give me. She finds it very difficult to swallow pills, esp. large ones, so all my many attempts to get her to take vitamins while growing  up failed. Therefore, I'm very pleased that she's now apparently willing to try it and want to encourage it if possible before she changes her mind!  Many thanks.



#18 Kathrynne Holden, MS

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Posted 10 April 2014 - 04:09 PM

Always bearing in mind that this is not my area of specialty, here are some comments:

 

First, and most importantly, despite her genetic testing she needs to see a specialist who can rule out celiac disease; gluten sensitivity can masquerade as lupus.

Next, be certain she has had a test for serum vitamin D (25-Hydroxy vitamin D level); deficiency is widespread among people with lupus.

 

Then, if lupus is definitely diagnosed, her doctor will advise as to supplements, probably something like:

 

fish oil 4000 mg/day
DHEA 75 mg/day
Calcium 600 mg twice daily
Vit E 150 mg/day (d-alpha tocopherol)

 

Avoid alfafa sprouts, beansprouts; sprouts contain canavanine, which worsens autoimmune diseases. Minimize cheese and red meat.

 

If you have further questions, I will help if I can. I have colleagues who are proficient in this area who I could query. But most of all, be certain her doctor has ruled out celiac disease and vitamin D deficiency.


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#19 Appala

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Posted 10 April 2014 - 05:04 PM

Thank you so much. I'll tell her what you've said. Also, I forgot to mention that on 23andMe, both she and I had the MTHFR genetic mutations (C677T and A1298C as I recall) that apparently causes folic acid deficiency. The research on MTHFR is apparently not complete enough to give clear guidance about who, when, how, or whether to treat.  You're supposed to take methyfolate and methylcobalamin (B12), but I can't find a clear explanation of how much. There is some legitimate research linking it to Parkinson's and other conditions, but not well understood or proven yet. Any comments appreciated.



#20 Kathrynne Holden, MS

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Posted 11 April 2014 - 05:54 PM

Regarding the MTHFR mutations, I doubt you would find a dietitian willing to make recommendations on vitamin amounts until you have consulted a specialist -- the implications are vast, complex, and require special tests followed by an individualized approach. I'm reasonably certain you would require active forms of B vitamins, but beyond that it would be potentially dangerous to make recommendations.

 

I would begin by asking both her your doctor for guidance in finding a specialist, or at the very least, see if there is someone listed on

 

B vitamins are often of great importance in PD, and normally I would probably recommend a B-25 complex; but in your case, if folic acid deficiency is indeed present, this might well be inadequate. Then, if you take levodopa, one would need to be concerned whether B6 in high amounts should be included. Have you been tested for blood levels of homocysteine? That would also be important.

 

I do wish I could be more specific, I know it must be frustrating not to get recommendations for supplement types and amounts. But I can assure you, the vital thing is to first get correct diagnoses, then to work one-on-one with the health professional(s) involved. Age, dietary intake, any medications used, blood tests, other diagnosed conditions -- all these are additional pieces of the puzzle. You and your daughter both have complicated cases and accurate testing and diagnoses are of the first importance.

 

I very much hope you will both seek individual professional help, and do let me know the outcome. If I can then help further, particularly with regard to PD, I certainly will do my best.


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