I have just found a LLMD in D.C. that I will be going to in August...Ya! But, in the meantime I was wondering if I should try and treat myself with something.
Here are my symptoms:- Brain fog, poor memory, feel like I'm not really here. Night sweats, actually in the day as well, dizzy, floaters,muscle painful and tense, lower to mid inside back area pain, anemia with high ferritin levels. 1488. Just tested my mum and her's are 1280. We were both born with cataracts. Blood Dr has dx me with hpyerferritinemia cataract syndrome and low grade myelodysplasia.Also said I have anemia(but doesn't know what type).
Hemo and Hematocrits and low. I have given up on blood Dr because he want to put me on adderall, I don't know what for.
After trying to do research with my brain not working, I believe I have Babesia.
My major symptoms right now are body weakness, I am so shakey and weak(not tired,can't sleep). I am unable to do anything without sitting down.
What do you all think? What should I do? August seems along way off to feel like this. Thanks, Atheana Also, my
Posted by Keebler (Member # 12673) on :
- Until you get to your LLMD, I would start by reading each of these books and then settling on one or the other.
You could also call that LLMDs office and ask if they suggest certain books, supplements or diets.
A gluten-free, whole foods diet is a good place to begin (no processed foods, simple sugars or additives). Low Glycemic. -
Posted by Keebler (Member # 12673) on :
CRYPTOLEPIS sanguinolenta -
Posted by AuntyLynn (Member # 35938) on :
Um ... nutritional support?
Make sure you eat something (preferably including a protein food, like nuts, hard boiled eggs, cheese) every two hours during the day to try to keep your "shaky" symptoms at bay. Weak and shaky could definitely be a sign of low blood sugar - and avoiding white flour, SUGAR, and high glycemic vegetables (like peas, corn, and potatoes) will also help to keep blood sugar from spiking, and dropping drastically.
Of course the "empty calories" one gets from candy, chips, pretzels, sodas and the like, should be replaced with things that actually have some nutrients - like nuts, or fresh fruit.
Do you take any vitamins at all? If not, now is a good time to start!
Most Americans are deficient in the B-Complex vitamins, which are relatively cheap to buy. These "anti-stress" vitamins are usually found in WHOLE GRAIN breads and cereals, which is why we are likely to have deficiencies! Please add these to your grocery basket instead of the nutrient-empty wallpaper paste that we know as "white bread." If you enjoy Chinese food, try "Brown Rice" with your dish instead of white - you might be pleasantly surprised at its mildly nutty flavor, and its light chewy bite.
You might also consider getting a can/bottle of Brewers Yeast which is really high in Bs, contains some important minerals and some essential amino acids (protein building blocks). Make smoothies at home with a tablespoon of brewers yeast to get a hearty helping of Bs, that you might actually feel.
Vitamin C and Vitamin E are antioxidants, which can protect your cells from damage and help to reduce inflammation caused by your infections. I take vitamin C with bioflavonoids daily, at a dose of 1,000 mg - just for maintenance.
Vitamin C is known as "the great detoxifier" as it scavenges for allergens, bacteria and viruses in your bloodstream, and helps your body to rid them through the urine.
C is also a "natural" diuretic, and you may find that you are "passing water" more often when you first begin to take it. C is water soluable and non-toxic, even at very high doses. It is known to help fight infections, even the common cold - and whenever I feel a cold coming on I starting taking a Gram of C (1,000 mg) each HOUR until I feel I've conquered the challenge.
Also SOME forms of anemia are actually caused by a Vitamin E deficiency. Although I doubt your doc will recommend iron while you have high ferritin levels; if you decide to start off by taking 400 IU of Natural Vitamin E each day, take it several hours away from any iron that you may be taking, as the iron can "oxidize" the E (destroy it)!
Vitamin E helps to "preserve oxygen" so your body can get more "mileage" out of the oxygen in your blood. It helps to prevent scarring, promote smooth skin and skin healing, and cab help to keep your arteries smooth and elastic.
ALSO CoQ10 and/or Tumeric/Curcumin (the "yellow spice" in mustard) both have anti-inflammatory properties that can protect your cells from swelling and might reduce pain. CoQ10 is found in our heart muscles, and is said to prevent heart disease. I see many people on these boards say they are taking Tumeric/curcumin to reduce joint pain.
Do you feel jittery or are you prone to muscle cramps? Try taking some magnesium. (I use the Citrate form.) On the rare occasion I might get "eye flutters" or muscle twitches, I nibble on a 400 mg tablet of magnesium, and wash it down with water. Usually the cramps will stop before I have ingested half the tablet... and this includes those painful and debilitating and very annoying Leg and Foot Cramps! They can disappear in less than a minute!
Also, think about adding some probiotics to your diet - as your LLMD will definitely put you on these once you start any antibiotic treatment.
It's never too early to build a balance of "friendly" digestive bacteria in your intestines, and if you have problems with regularity or or heartburn now, probiotics will only help.
Try KEFIR drinks (in the dairy aisle) for a nice probiotic milkshake, or reintroduce yourself to YOGURT (I love the whole milk variety made by Brown Cow or Seven Stars Farms, if you can find them!) These brands are not typically "sour" and are more like a milk pudding! But Dannon will do in a pinch too! If you feel REALLY adventurous, try a bottle of "Kombucha" which is a fermented drink, that IMO, requires an "acquired taste."
You want to start building colonies of healthy bacteria in your intestines because antibiotics will kill them, and the probiotics will protect against your getting a "yeast infection" or worse - while you are treating your TBDs.
NOW, I WILL STEP ASIDE ... and let others who are far more knowledgeable on the subject, make suggestions as to what else you might try to get a jump on your treatment!
But I am a firm believer that feeding your body with the basic nutrients that it already needs, will only help to give your immune system a "fighting chance."
Posted by AuntyLynn (Member # 35938) on :
This is "Dr. B's Protocol" found prominently posted at the top of this "medical questions" section!
This link will give you an idea of what INFECTIOUS DISEASE SPECIALISTS started doing to treat Lyme, when they found that the IDSA protocol did NOT get people well!
Granted, the Wholistic ("anti mold, anti-heavy metals, anti-dairy/meat") proponents, the Chinese Herbalists, and the RIFERS all have their place in the healing chain -
but IMHO,
If you want to KICK Lyme butt, as hard and as fast as you can, it looks like you're gonna need some Honest to Gawd pharma-made ANTIBIOTICS! and likely... darned PLENTY of 'em.
(Please see the Burrascano Protocol link above.)
But I will say that Dr. H, who is another Infectious Disease Doc, and a PIONEER in the field of TBD treatments, says that Cryptolepis (an African Root) is extremely effective to treat Babesia!
You really need to look at every option with this bug. BEST LUCK to you and your Mom!
Posted by Sammi (Member # 110) on :
Your symptoms do sound like Babs. Be sure to get on the doctor's cancellation list, you may get in sooner this way.
Posted by Keebler (Member # 12673) on :
- For reference. Not all LLMDs treat the same, nor should they. This is a guide and will help you with the self-care part of it (how you take care of yourself):
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
Begin a good diet and elminate white foods and sugars so that when you begin antibiotics you will be less likely to get candida/yeast.
Does sound like babs is in the picture.
Posted by mahalo (Member # 37775) on :
WOW. you must be exausted. you need a special dr for the hemacrotosis..you can be anemic and have hemacrotosis at the same time. it is inherited. the same way there are a special community of drs. who help lyme patients there is also a "secret society" of drs. to help with this kind of hemacrotosis. i will pm you info how to find them. you need to have weekly phlebotomy (as long as your hemoglobin is over 12.5) 1 pint a week.. and continue until your ferritin is below 10,,then you can consider yourself deironed and then upkeep with 3x a year phlebotomy. this in and of itself causes incredible exaustion and brain fog..it's awful. your lyme dr. may not understand this problem so you may heve to keep these medical problems separate...you must be deironed, as your mother must and get to a special hemacrotosis literate dr..in the meanwhile keep your iron intake down, and get to someone who will prescribe these weekly to bi weekly phlebotomies. to have lyme is awful and to add this problem it is a heavy load to bear. Also since your new lyme dr probably won't understand the blood problem you may want to find and print out info for him so he will understand that you can be anemic and have too much iron in the body so he can be informed of your other problems. GOOD LUCK! and keep your iron down.!..do not eat any iron rich foods with vitamin c as this will help more iron absorb,., but instead try to take 1000 mg of calcium with food as this wil reduce the iron absorbed by up to 40%. mahalo!
Posted by dal123 (Member # 6313) on :
I have the same issue, can u PM me this secret society of dr's that work with Lyme and high iron?
Posted by atheana58 (Member # 33429) on :
As usual you guys are a wealth of knowledge. I am a very healthy eater. No sugar,bad carbs,Vegetarian and try to eat raw. I do take vitamins and probiotics. Believe it or not my hemotologist did put me on iron pills and I got so sick. He said the iron pills wouldn't do that. I have several of the books you reccommended, so I will start reading. I am going to my reg MD tomorrow to talk to him about blood work. He seems to be more open about this. I think I may have hemochromotosis.
I want to try and get my body stronger before I start on my abx regeime. Sorry for misspell, nothing looks right. I do take Mag and that seems to help with body tension and pain. dal123- Do you think this is related to Lyme and co? Sammi- I did ask to be put on cancellation list. I do feel I am going to the right one so I gues I will just have to wait. May be I can get the anemia and blood stuff sorted out before I go, or maybe this is part of the Lyme disease. Thanks all, Atheana
Posted by dal123 (Member # 6313) on :
Definitely, look into taking IP6 powder from integrative therapeutics, will block iron,as well as raise natural killer cells. Are you of Mediterranean descent?
Posted by atheana58 (Member # 33429) on :
dal123, I was born in Northern England. I am so confused because if I have Hyperferritinemia cataract syndrome to have your blood drawn weekly will not lower ferritin levels.
But on the Hereditary Hemocrhromatosis test i show negative for C282y and H63d mutations in the HFE gene. It also, said this does not rule out the presence of other mutations within the HFE Gene or a dx for HH. My Dr said I do not have Hemochromatosis. I am just wondering if I should rqst the phlebotomy.
This is all to confusing for my simple Lyme brain. Thanks all. Goodnight.
Posted by mahalo (Member # 37775) on :
@dal 123..these are not lyme drs..these are hemacrotosis drs. they know nothing about lyme.i will pm u the info. a hematologist is not the right kind of dr. for this disorder (like an id dr. is not usually the right dr. for lyme) as is evidenced by the fact that he gave iron pills to someone with iron overload. IP6 powder may or may not be beneficial supplement for some things but it despite claims does nothing for iron overload..its not hurtful but not helpful in any way shape or form. the only binders that are helpful are rx only. atheana please get to a dr. who specialises in this from the organization i pmd u. mahalo!
Posted by glm1111 (Member # 16556) on :
Knowing what I know now, I would start the salt/c protocol ASAP. Also antiparasitic herbs such as Parastroy or Humaworm.
The sea salt and vitaminc C will also help with the weakness and support the adrenal glands. Go to lymestratgies for more info on salt/c.
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