I don't know how much more I can take. How much more I can lose? Everything that was my life before Lyme struck is gone.
I really need your help out there. I do not have a lot of money and I have no health insurance. I have a GP who is willing to prescribe antibiotics and said he will go along with whatever I want to try.
I don't have the cash to go to see a LLMD. Can any of you advise me about what is worth paying for and what isn't.
What is best to improve my neurologic symptoms? I am now starting with severe musculoskeletal pain too and I need to do something. But I don't know what!!!!! PLEASE SOMEONE TELL ME HOW TO MAKE THIS STOP!!!!
Even though I am a nurse I do not know much about holistic treatments. I hear you mention things in different threads but because of the brain fog I haven't retained much.
If anyone who has seen improvement in neurologic symptoms can tell me what they did that helped? There are so many different treatments out there.
The marshall protocol, salt/Vit C, detoxing, probiotics it is all too confusing, and I can't physically read about all of them.
Please HELP!!
Posted by Keebler (Member # 12673) on :
- Magnesium is the first supplement that comes to mind to help your symptoms. I know you said you can't read all the protocols but my hands just can't explain and separate them out. You can save this set for comparison over time.
=========================
Gael is a poster here with lots of knowledge and a good success from Salt/C - you can PM her for details as to study. It's not for everyone but you would read all about it first.
You can search here for posts by gael1111 - Member # 8816
I also don't post anything on the Cowden protocol but some here use that. It is mostly tinctures.
I will post a collection of authors' works. I make note to see a LLMD or LL ND and why - and to compare all the pieces of each so that you know if you do a plan you have, somehow, covered all the bases.
My hands can't type more now so I cannot edit this to custom fit your questions. Scroll down to the books by Zhang and Buhner. And the book about RIFE. Copy and save the set for your reference file.
Then back up and consider the fuller piece for study.
Good luck.
=============
Are you gluten-free? A gluten-free diet will help tremendously and most LLMDs recommend this.
Not an herb, but the nutritional supplement, MAGNESIUM is the number one supplement for pain reduction. Fish oil, too.
For LIVER SUPPORT - the most common supplement is Milk Thistle but there are others. As the toxin from lyme, and also the chemicals from Rx can be hard on liver, supplements to support and protect the liver are essential.
Here's a composite I've made of many things to consider. Not all herbal formulas are on this, but most. It's not so easy as just taking this or that. Some herbs are for support; other are more for antimicrobial action. Herbs are nearly always in a combined formula. And your LLMD should be aware of everything you take as it could alter the effectiveness of the Rx plan.
If your LLMD is knowledge with supplements, great. Some are aware of the nutritional supplements such as vitamins and minerals (magnesium, etc.) and others also have knowledge in a few specific herbal supplements such as Milk Thistle.
You might want to consult a LL ND (naturopathic doctor) or other professional with training and licensing in this area. A good LLMD will have a working relationship and should be able to refer you to someone who will fit your needs in these complementary areas. And, be sure any LLND is truly LL and ILADS-educated, and works well with your LLMD.
A ND who is not LL (that is ILADS-educated) simply does not have the knowledge to be treating lyme/TBD (tick-borne disease) patients. They may be great at treating other patients, but lyme patients deserve doctors (of all types) to be thoroughly educated about all aspects of TBD (tick-borne disease).
Now, they may not go by the ILADS guidelines, but they should know the work of all the authors listed on this page - and that of Alan MacDonald, too, with his work on biofilms. And the work of Garth Nicolson with mycoplasma.
All this is to compare and contrast - and to be sure all the bases are covered. Rx protocols are included for background but most also incorporate supplements.
================================
* This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . .
- Full article at link above. ==============================
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
by Prof. Robert W. Bradford and Henry W. Allen
EXCERPTS:
. . . A discovery of great importance relating to a toxin produced by the causative agent of Lyme disease, Borrelia burgdorferi, has been linked to a similar toxin produced by the organism Clostridium botulinum (botulism) *. . . .
[extensive explanation of:]
* Lyme Disease Toxin . . .
* Action of Toxin . . .
* Dietary SUPPLEMENTS in Lyme Disease . . .
. . . .
- Full article and great photos at link above. -
Posted by glm1111 (Member # 16556) on :
Sorry, You are having such a rough time. I am also a nurse and have been treating myself for the past 5 yrs.
I did get dx by an LLMD in 1999. Have you been dx with Lyme and Cos? Did your GP dx you?
At any rate after 4 yrs of antibiotics I started with antiparasitic herbs and then salt/c on my own because I could no longer afford an LLMD either and I knew I needed something else.
If you decide to take some antibiotics doxy probably is a good place to start. I think it's 200 mg bid. I probably needed them in the beginning because I was so deathly ill.
I had SEVERE neurological symptoms. Coconut oil helped me with neurological symptoms as did digestive enzymes and adderrall. The holistic treatments are not that expensive.
I am sure others will come along with suggestions as well. If you decide to do the salt/c I can give you the info on how to ramp up.
Lyme disease has a MAJOR parasitic/worm connection and the salt is a natural antibiotic and puts them into osmotic shock. This is a rough disease, but it does get better.
Gael
Posted by Keebler (Member # 12673) on :
- Gael is correct - and some LLMDs also think it is important to address the parasite issue to ease that burden.
You asked about the Marshall Protocol. I researched that at length a few years ago but could not tolerate the benicar. Also, my vitamin D tests were not high, so I was not a candidate. That is ONLY for those with high levels of D. And MP is very restrictive.
However, you can cross search with this author's names: JP Waterhouse (or Waterprice). She wrote a series of excellent articles about her success with MP. You can also go to the site of "The Townsend Letters" and search there.
====================
Similar to the MP but not requiring benicar nor restricted vitamin D - and much more simple is the Road Back Foundation protocol. And you may find a doctor near you. Many have been helped with this. -----------------
- overlooked treatment option for rheumatic and related diseases. The particular focus here is antibiotic therapy, proven safe and effective in NIH-sponsored clinical trials.
Thousands of patients have reported successfully using antibiotics for conditions including rheumatoid arthritis, scleroderma, juvenile rheumatoid arthritis, lupus, dermatomyositis, ankylosing spondylitis, Lyme disease, Reiter's syndrome, mixed connective tissue disease, fibromyalgia and psoriatic arthritis.
Results of an international survey of patients documented dramatic results including relief of pain, the lessening of swollen joints and an overall successful return of quality of life.*
-
Posted by Beachinit (Member # 21040) on :
Antibiotics that are cheap and work: doxycycline 100 mg #100 $16.50 at Walmart if your MD says you are to take 2 twice daily that will last 25 days. Same price for same number of bactrim DS tabs, some are taking 1 tab twice daily therefore that is 50 day supply etc..Flagyl 250 mg same price. All three for $50.00. I have no health insurance so I started with these and they have been very helpful.
Ideas but not advice,
Beachinit.
Posted by Amanda (Member # 14107) on :
If your primary care is your only option and is willing to treat you, then I recommend sending him/her a copy if the ILADS guidelines. ILADS is a medical society, tell your MD that. They can also get a lot of other materials specifically meant for doctors
There are two documents, and I would advise you read them too. One are guidelines, the other is Dr. B's diagnositic hints. Both should be read by you and the MD, and it will answer many of your questions.
Unfortunately, drug/herb protocols vary from patient to patient, this is what makes treating the disease difficult even for MDs that know a lot about it.
VERY GENERALLY - musculoskeletal problems tend to respond to tetraccyline drugs, but again, some patients have had better luck with say Ceftin.
Nuerological problems are more difficult. You could try doing 3 to 4 Bicillin LA shots a week. Most patients start out with 1 shot a week and build up because the herx's can be bad. In seems, generally, that difficult nuerological problems require several months of IV meds.
Again, read the two guidelines. Dr. B also talks about supplements. There are so many options. Vitamin B shots can help sometimes with nuerological stuff. high doses of MSM (9 to 10 g a day, but you have to build up to this) can help with joint issues.
Finally, you need to be checked for more than lyme, ticks often give us other infections as well. Again, read Dr. B's guidlines for more information.
Good luck to you, I'm sorry you are suffering
Posted by momintexas (Member # 23391) on :
Some pharmacies offer low cost or even free abx. I got my Doxy for free. Look for the ones that advertise $4.00 prescriptions. Often they will have a list of 10 or so abx that are free.
Market Street, Kroger are 2 that I know of. I don't know if you have them near you.
I agree with the coconut oil. Has made a HUGE difference for me. So has treating yeast.
Posted by Keebler (Member # 12673) on :
- A Gluten-Free diet is also very helpful to ease many symptoms. Most LLMDs want their patients to be gluten-free.
Quinoa ("Keen-wa") is a wonderful non-gluten whole grain and a good place to begin. Wild rice, too. Amaranth, Buckwheat, Millet. All the red, brown and black rices.
www.celiac.com for details - but I'd avoid most gluten-free manufactured foods or mixes. The glycemic index is usually through the roof.
Gluten can be hidden in so many things from toothpaste to lip balm. Even a trace can cause major neuro pain for some.
And that brings me to aspartame and MSG. Be sure to check all your labels as these make lyme symptoms much worse and are to be avoided - even a trace of aspartame can send neuro symptoms to volcano status. -
Posted by 17hens (Member # 23747) on :
If I had to do this without an LLMD but could
get meds, I would do 400mg. of doxy (my LLMD
believes that 200mg will put them into cyst
form but 400mg is needed to kill) and salt/c.
Posted by randibear (Member # 11290) on :
i have started buhner protocol (cat's claw, resveratrol, and andrographis) and so far am seeing mild improvements.
i'm doing one pill three times a day right now.
it's fairly cheap and you can get it on iherb.com.
he also has a website. i think it's called planet earth but i'm not sure.
Posted by MariaA (Member # 9128) on :
planetthrive.com has a section that Buhner writes:
My LLMD uses the Marshall protocol but is also open to other things as well. He uses supplements etc. I was diag April 2009 and although I am in bad shape (I was VERY bad in April) I can say I've seen some improvement. I have a long way to go but I have also come a long way. As my LLMD keeps trying to tell me this is a marathon not a sprint.
Good luck and God Bless,
Karen (:
Posted by ping (Member # 6974) on :
quote:Originally posted by Beachinit: Antibiotics that are cheap and work: doxycycline 100 mg #100 $16.50 at Walmart if your MD says you are to take 2 twice daily that will last 25 days. Same price for same number of bactrim DS tabs, some are taking 1 tab twice daily therefore that is 50 day supply etc..Flagyl 250 mg same price. All three for $50.00. I have no health insurance so I started with these and they have been very helpful.
Ideas but not advice,
Beachinit.
nurse lymy - Start with the suggestion for abx given above. If you can get your rx's for $4, then that's wonderful.
I was in tx for 5 years, now in remission and off abx for 3 yrs. Get a good quality acidophilus and take it well away from your abx. and have your doc rx some Fluconazole or Nystatin because you'll likely have yeast issues, no matter what. Very good water & nutrition/food is essential. Gluten free diet is good, but very low sugar/carb diet is absolute, else you'll suffer badly from yeast.
Expect to feel rotten and miserable, but don't give up. Treatment of these infections takes a long time and you have a long and winding road ahead of you. After you're in remission, then you can concentrate on detox and other issues.