luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I was initially bitten in 1995. Even though the ELISA test at the time came back negative, my doctors treated anyway as I was an "at risk" individual with symptoms. I took abx for 6 mths before getting well. I did not know then that the subsequent illnesses and maladies I was to experience over the next 10 years (none of which were too invasive on my life) were actually symptoms of the lyme disease progressing.
In 2005 my lyme was diagnosed by Western Blot through Igenex. At this time, the doctors determined I was in late stage (chronic) lyme.
My symptoms were migratory joint pain, migraines, stiff neck, hearing loss, shortterm memory issues, mental confusion (hard to process what people said)and hot flashes.
My initial treatment for the lyme was homeopathic. The medical doctor who was lyme literate did not believe abx were useful in chronic lyme. The remedies he prescribed relieved the migraines, memory loss, mental confusion and hot flashes very quickly and permanently.
Inflamation in my joints however went off the charts. I became severely disfunctional and 5 mths later was diagnosed a moderate RA.
The very night of my RA diagnosis, I found a website about diet and RA which endorsed a vegan diet. I decided to give it a try and the results were stunning. To date, that is the most dramatic improvement I have experienced for the joint pain.
One month later, I had read up on a rheumatoid website that believes in an infectious cause of RA and pleaded with my rheumy to prescribe monocycline instead of methotrexate. He did so reluctantly. 100mg Mon, Wed, Fri. Not enough for lyme but pursuing mycoplasmas.
Two months after beginning monocycline, I began working with another doctor who practices intergrative care and he began testing to find out how well my body was functioning. Through lab tests, he determined my DHEA was very low and my liver was stressed. Also, he confirmed what I had suspected; that I have systemic yeast from a leaky gut. Also he found parasites and bacteria in my blood.
He attempted to go after the yeast initially with IV dioxychlor, but my reaction was too severe (increased joint pain)so he stopped any attempt to kill off pathogens and instead began building up my body's defense and elimination systems. He did this by a multitude of enzyme and amino acid supplements as well as liver and heart support supplements and a general multi-vitamin and probiotics. Also, IV vitamin cocktails and glutathione to help with metals removal (I forgot to mention I am highly contaminated with lead and mercury) as well as a Lipo (I can never remember the full name)IV to rejuvenate my liver.
All this is in preparation for killing the yeast and removing the metals. He had to build up my body so I can handle the process.
I am two months into treatment with him and am nearly asymptomic. (we are still in the building up phase) I am 4 mths into the minocycline therapy at 100mg MWF.
To be honest, I'm feeling the diet and the supplements and IVs are having the most effect. But since I am faithfully taking the mino as well, I certainly can't rule it out.
We are about to begin dealing with the metals. I am scheduled to have the last of my amalgams removed and replaced with a less toxic substance.
I am expecting a strong but hopefully temporary setback once chelation of the metals begins.
For some reason, if I soak in Epsom Salts, I have horrific joint inflamation that lasts about 48 hrs afterwards. I don't know why this is, but I am thinking it may be pulling metals or killing yeast.
As for the lyme, I'm not presently pursuing it. Lyme is so unknown. One camp of doctors thinks it is no big deal and easily irradicated. The other camp thinks it is extremely smart and capable of taking over the body and creating an environment in which it can thrive and avoid abx and immune responses. It is also considered opportunistic in that it sets a stage upon which many pathogens can develop and grow.
In other words, all my many issues; yeast, metals, leaky gut may have Lyme as the orginating cause.
My longterm plan is to clean up everything possible and see if I still have lyme afterwards. Since lab tests are so inadequate, I'm not sure how I will make this determination.
My main goal now is to get rid of RA.
I'm happy to report that my "Great Day" I reported about earlier this week has turned into my "Great Week".
I'm holding my breath as to whether this is a longterm improvement or a temporary reprive.
Susan
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Susan, this sounds so hopeful..Best of luck in your recovery..I am interested in what you used for the memory and confusion issues. Thanks.
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
You have mentioned this before and I am not sure if you realize it or not -- the IV fat product you are doing with the IV glutathione is called Lipostabil (used to be called Essentiale). This is IV Phosphatidylcholine imported from Switzerland.
Essentially what you are doing is known as the P.K. protocol. I have been trained to do this through hubby's PICC line. It has helped him very much, but is very expensive.
I personally don't think it kills lyme, but do feel it is great for detoxing both the brain and the liver.
Let me know if you want me to look up the reference to the journal article about this published several years ago in the Townsend Letter for Doctors and Patients.
Glad to know you are improving. I definitely agree that you need to fix all the problems you know about and then take it from there.
The hard part as you have pointed out is knowing the cause of the problem -- for example with your arthritis -- if you can reduce inflammation the symptom will improve. However, if it is caused by a bacteria or overactive immune system then that problem would have to be addressed to actually fix the problem. You have to get to the underlying cause.
For example,in the Celebrex commercials the person takes an anti-inflammatory and then goes dancing or ice skating or whatever and they weren't feeling the pain, but they continue to do damage to their knees and joints and frequently end up needing a hip replacement or joint replacement 10 or 15 years down the road.
As far as knowing if you are "cured", I would use the same measures all LLMD's use. If you stop antibiotics (even the low-dose) and also anti-inflammatories and remain symptom free -- then you are "cured". At least that is the way I would look at it. I do think you will need to remain hypervigilant to any return in symptoms -- however minor.
As for the epsom salts -- they are magnesium sulphate. I find your reaction curious and intriguing as many people take MSM (which is essentially sulphur) to reduce joint pain. Can't explain this.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Everyone needs to understand that there is more than just lyme when we are dealing with chronic lyme. This....You know too well. Treat me once, shame on you....treat me twice...shame on me....
Did you see the movie "Inconvienent Truth"? Everyone should see it. No wonder that we are all sick.
It is not only lyme!?!?
Posts: 51 | From Roanoke,Va | Registered: Jan 2003
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
LUvs2Ride, you should get your genetic testing done, by testing4health or Genovations. You may have methylation errors that don't allow you to process sulfur properly, which could be causing the epsom salts reaction.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
"Chemically, lecithin is phosphatidylcholine."
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Wanna talk toxins...how about arsenic? The arsenic-glutathione complexes...
Find the sulfur, cysteine, CoA, ATP, nitrogen metabolism...connections. Osp A and B
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic