What's working for me

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pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 3/4/2009 4:56 PM (GMT -7)   
I am a physician with Lyme/ Babesia/?Bart and I run a website for women's health. Some of my web patients wanted to know what I've been doing for my Lyme as I am really starting to feel so much better. So here is what I blogged. I realize it may be very basic for most of you, who have been so helpful to me - but thought I would share it as I am really doing better and hope it can help someone else:


HOW I AM TREATING MY LYME

Many of you have emailed asking how I have been treating my Lyme disease. Lyme is the fastest growing infectious disease in the U.S. and most doctors do not diagnose or treat it properly. If you are not suffering from, or interested in Lyme please skip this blog but pass it on to whomever may be suffering. I hope this will help anyone struggling with this illness.

I am not a Lyme expert, but I found doctors who are and I am doing really well. Lyme disease is curable. Here is what has been working for me.

* Testing for Coinfections. Most people with Lyme also have other infections, called co-infections. Some people never fully recover from Lyme even after their initial infection is succesfully treated because they have untreated/undiagnosed coinfections. One coinfection (that I was diagnosed with) is Babesia. Babesiosis is protozoal infection similar to Malaria that infects the brain. The only laboratory that found my Babesiosis was Igenex Labs (listed in my book). Some say that "everyone tests positive at Igenex." This is not so. I have tested many chronic fatigue patients over the years for Lyme with Igenex and many test negative. It is important to understand that negative tests for Lyme or co-infections is not always accurate. There are many reasons for this. In the case of Lyme, the infection could be in a form that is invisible to the immune system (L form or cysts, see below). False negative tests can occur if a particular bacterial strain was not tested or if a weakened immune system is unable to form an antibody response to the infection. Symptoms are the most important way to determine what co-infections are present. Some infections are not obvious initially, but as treatment progresses, symptoms change, and coinfections become more obvious. As I complete my Babesial treatments I now suspect that I have Bartonella. My Bartonella tests thus far are negative but as symptoms emerge and persist (neuralgia, persisting fatigue, nausea/malaise), I suspect this coinfection and plan to treat for it. I am also doing further testing for it, (Endothelial Cell Growth Factor Test).
* Treating Coinfections. My Babesisos was treated with Mepron, Azithromycin and herbs (below). You must treat Babesisos for at least 5 months- if your doctor says otherwise get another opinion. It must be treated for the full life of a red blood cell (4 months) otherwise the infection will recur. Studies have shown that treatments lasting 5 months had less failures. After 3 to 4 months headaches, and noise/light sensitivity, chills and sweats improved. Using a high dose homeopathic (LM or Q dosing of Nux Vomica) with a skilled homeopath finally got rid of my headaches. I would not recommend doing a homeopathic treatment early on as homeopathy can flare a symptom before it improves it, and that can be confusing. Make sure your homeopath is very experienced.
* Antibiotics. I used Doxyclycline initially for Lyme, which is a great treatment, but I became very depressed on this. Because of mood problems my Doxycycline was switched to Omnicef (300 mg twice daily) and after 1 month, Probencid was added to further increase Omnicef levels. Antibiotics drive the Lyme infection from the blood into the tissues, where it persists in a cyst or L form. These forms are not detected by the immune system, so blood tests may be negative, although the infection remains in the tissues. For this reason throughout my treatment I have used Una de Gato (Cat's Claw) because it treats the cyst/L forms. Flagyl also treats cysts, so I currently "pulse" this in every 3 weeks for 2 weeks. In addition, I use two herbs, Artemesin (initially I used the less potent Artemesia) and Enula, (from Nutramedix), to treat Babesia and support immune function. Herbal remedies cause die-off symptoms similar to antibiotics (below) so, if you add these in, do so gradually and of course under your doctor's supervision.
* Die-off. As infections are treated, the body reacts to the dead bacteria/protozoa and the symptoms from this are called "die-off." Die-off is a *****. Everyone experiences it differently, but die-off makes the treatment of this disease the most difficult part of this disease. My die-off symptoms were depression, severe unrelenting headaches, numbness, fatigue, brain-fog (literally feeling as if your head is stuffed with cotton), confusion, poor name recall, memory loss, executive function problems (missed appointments, unable to add columns of numbers, forgetting to pick up kids, difficulty organizing/prioritizing/sometimes getting lost in the neighborhood, vertigo, and ADD with difficulty keeping organized or on task), soaking sweats,freezing cold, and joint pains. Cholestyramine (see below) is a prescription medication that helped reduce my die-off symptoms. Supplements that also helped were Pectasol from Douglas (a natural form of cholestyramine - I use both), and Pinella extract (an herbal "brain clearing extract" from Nutramedix). Doing less, asking for help, asking for reminders from friends and family, keeping lists and pre-planning my days (best done the night before so that I could problem shoot and ask for help with driving, shopping, etc) were key.
* Mood. Mood symptoms were perhaps the worst symptom for me. Many people experience depression from long term tetracycline antibiotics (Doxycycline, Minocycline, Biaxin). Switching to Omnicef helped my mood. Lithium Orotate (4.8 mg) 2 pills three times/day (this is not the same as lithium carbonate used in bipolar illness) was also helpful. During a workshop with Dr Christiane Northrup I was introduced to a world wide healing practice, Bruno Groening Circle of friends, which involves meditation to music (downloaded from the web). This practice has been dramatically helpful both physically and mentally.
* Sleep. Adequate rest is critical to treat and recover from Lyme. Unfortunately, die-off symptoms and neurotoxins can interfere with sleep. I found using L-Tryptophan 500mg (4 capsules on empty stomach) one hour before bed and 9 to 15 mg melatonin worked very well. (Yes, this is a high melatonin dose, but melatonin is a powerful brain antioxidant which helps protect the brain from neurotoxins) Regular rest and naps are essential to recover.
* Cholestyramine. This prescription medication is a resin that is normally used to bind fat. Fortunately for Lyme sufferers, it also binds neurotoxins and can be very helpful to limit neurologic symptoms. There are a few things to know about it. Most doctors prescribe it in packets or yellow powder that contain dyes and substitute sugars not well tolerated by Lyme patients. As a result, many patients give up on it, which is a shame as I found this remedy very helpful to reduce die-off symptoms. Be sure to ask for Generic cholestyramine in a tub. It is a white, pleasant tasting powder. Two pharmacists had trouble finding this for me- if you have trouble, call Pierce Apothecary (617-566-4080) and they can order it for you with your doctor's prescription. To avoid constipation while using it, take 4 to 6 tablespoons of ground flax seeds. Cholestyramine must be taken between meals and at least 3 hrs away from Mepron, because it will absorb your medications and food. Good times to take this is during the night if you wake up, and late afternoon 2-3 hours before dinner. It can deplete certain minerals so I now take iodine, potassium , vitamin K2 and vitamin D3 in addition to magnesium glycinate and calcium aspartate.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/4/2009 5:38 PM (GMT -7)   
Thank you for this very informative post. It makes me think that treating babesia for almost 2 years is too much. I always believed that bart which is the only one I tested negative for is my priblem now. I think I will stop the babs treatment. Going to LLMD next week.Blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 3/5/2009 7:36 PM (GMT -7)   
My blog is phulicohanmd.com

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 3/7/2009 1:47 PM (GMT -7)   
MinerAls, why did you stop Rifampicin? That is what I am considering for Bart with Zhang's herbs. y

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 510
   Posted 3/7/2009 11:04 PM (GMT -7)   

Hi pcpc,

Just curious did you have any GI symptoms? Thanks for sharing your story with us!!


 
 


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/8/2009 11:56 AM (GMT -7)   
PCPC, I have been on rifampin since September along with mino so I haven't stopped. I am going to stop treating babs with mepron/malerone for now as it has been 2 years.
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


MountainBiker
Regular Member


Date Joined Dec 2006
Total Posts : 106
   Posted 3/8/2009 4:57 PM (GMT -7)   
I've said this before, if it weren't for MD's who have had Lyme and/or had family members with Lyme, we'd all be pretty screwed.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 3/9/2009 11:16 AM (GMT -7)   
Answers to repies:

Minerals: Glad you are stopping the Mepron/malarone it's hard on your liver/pancreas....have you not done any Artemesin? It is also an immune regulator. I really believe that antibiotics should be used with herbs to treat the possible drug resistant strains and varied life forms of these bugs.

I grew up on the Cape and believe that I had infections as early as 1968 when I developed afternoon fevers and fainting episodes- no cause was found but I was diagnosed with TB a year later (which is weird unless one is immune compromised). I was on triple antiibiotics for TB for 2 years which possibly treated my Lyme?! Any way I had immune problems for 30 years after this and finally I tested myself and Lyme was there but old/dormant infection (probably all in the cyst state). I did Una de Gato (Samento) for 10 years and had a normal immune system! I was unfortunately rebit in 2007, unkown to me, so I have had to endure new Lyme and coinfections. I am getting through and nearing remission. I plan to use a herbal cyst treatment- Una de Gato or Cumanda, once off antibiotics.

Annoyed: You asked about GI symptoms. When I relapsed in May loose stools were the first sign that my infection had gone from cyst to systemic. This symptom is not often recognized as a relapse but I have since learned that once you are in remission and your stools loosen it is a sign that Lyme has entered the blood and if you catch it early (I didn't) you can shorten your relapse. Loose stool is typically the first sign of cyst to blood relapse of Lyme. Within 12 hours of Doxycycline my loose stools, which had been present for 3 months stopped. I have since been battling coinfections- but doing well.

Since being on treatment my digestion has been okay using Probiotics (Klaire labs ABX support) 2/day and I also use Nystatin 3 tablets twice daily- Nystatin is not absorbed so no liver effects and will help keep the intestine from becoming overrun with yeast.

kendal122
Veteran Member


Date Joined May 2007
Total Posts : 1088
   Posted 3/9/2009 12:50 PM (GMT -7)   
pcpc,do you have email address so i can talk to you privately?

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 3/9/2009 1:35 PM (GMT -7)   
Thank your for your wealth of information. I got a copy of the doctors report when I first went in to be seen a month after the tick bite (which I was told had nothing to do with anything). I was complaining of  loose stools, stomach pain, fatigue and headache. I believe I still had the EM rash. I will remember (journal) that loose stools are an indication of a lyme relapse and why.
I did not know that cat's claw kills the cyst form and I have it in the cubboard. When I get through this cycle (mine follows the full moon) and my symptoms die down, I will start taking it.

Currently I am taking Levaquin for bartonella and amoxi. I also take an arsenal of herbs and vitamins and minerals. I was given something with grapefruit seed in it for yeast control and so far I have no problem. I take 500 mg quercetiin 3 times a day which interferes with cytokine production to help reduce inflammation. Also Ashwaganda twice a day for adrenal support. I was given a vitamin, mineral, antioxidant, amino acid mixture that has boosted my energy levels significantly. It is called Energy Revitalization System. I also take about 1500 mg magnesium citramate . St John's Wort helps with my mood. On my own I have thrown in vitamin D, B12 which is depleted by lyme, and hyaluronic acid which helps my dry eyes so much I cannot go more than a day without it. I agree that L Triptophan is one of the best sleeping aids but it gives me a headache so I prefer to use Herbsom from Dr. Zhang. The primary ingredient is corydalis root and jujube seeds which you can buy online. I have lithium oronate in the closet and am glad you are helped by it. I also have sam-e. These are some of the things I will add - when I get MUCH bigger pill boxes!

I hope you continue to improve and keep sharing what is helping you.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 3/9/2009 3:47 PM (GMT -7)   
Kendall122 you can email me at my website address in this thread....

Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 3/9/2009 7:26 PM (GMT -7)   
Pcpc, you mentioned using Cat's Claw for Bb in it's cystic form. Are you saying you have reason to believe it actually destroys it, weakens it somehow making it more vulnerable to the immune system, or something else altogether? On what do you base this belief it's helpful against Bb cysts, and if it's research can you point me to the link please? Thanks.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 3/10/2009 7:34 AM (GMT -7)   
Yes I have reasons to believe that it helps to treat Lyme in the cysted forms. It made a huge difference in my health when I was only mildly symptomatic with borderline serology and i have maintained Una de Gato throughout my treatment with antibioitics and have done very well. Well as well as one can do with this disease (see above)!

Here is a link to some information http://www.digitalnaturopath.com/data/cats_claw_controversy.html

and here are some references:

Falkiewicz, B. and Lukasiak, J. Vilcacora [Uncaria tomentosa (Willd.) D.C. and Uncaria guianensis (Aublet) Gmell.] a review of published scientific literature. Case Rep Clin Pract Rev 2001, 2:305-16.

Reinhard, K-H. Uncaria tomentosa (Willd.) D.C.: cat's claw, Una de Gato, or Saventaro. J Alt Comp Med 1999, 5:143-51.

Keplinger, K. et al. Uncaria tomentosa (Willd.) D.C. Ethnomedical use and new pharmacological, toxicological and botanical results. J Ethnopharmacol 1999, 64:23-34.

Rowen, R. The incredible healing action of one simple herb. Dr. Robert Jay Rowen s Second Opinion 2003, 12(12). www.samento.com.ec/sciencelib/sabstracts/secondopinion.html.

kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 3/10/2009 9:30 AM (GMT -7)   
Thank you for sharing this information. I have been in a holding pattern for 2 months following 5 months of treatment (last treatment was IV Rocephrin). The treatments were very difficult for me. My symptoms are all neurological (no chronic fatigue or fibromyalgia). I went through round 2 of various testing to come back to original diagnosis of lyme. I see my llmd tomorrow who wants to resume treatment. I know I have options and am trying to decide what is best for me She is proposing long term (5 months), low dose combo of 3 drugs injected 6 days/week through a line run through my arm. I feel that this is very invasive, very expensive with no guarantee that the mix of meds will work for me. It sounds like you were treated with all oral meds?

I am doing what I can to support my immune system. Thanks for the info. also on supplements. What are your thoughts on RIFE treatments, sauna treatments or HBO treatments?

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 3/10/2009 12:39 PM (GMT -7)   
Sorry you are unclear what to do. That is a hard place to be when you don't feel well. Neurologic problems could be due to Lyme, Babesia, or the affects of these infections on the brain blood vessels (vasculitis and stasis). The real challenge of this illness is knowing what is causing what symptom. I have found that using a team of people has helped. I have an LLMD who tests me for the various coinfections and uses herbs with antibiotics. I sometimes run treatments by an orthomolecular guy who tests various remedies on me, a homeopath when a weird persistent symptom is around- like the horrible persistent Babesial headaches, and in 2 days I am seeing Dr Zhang for more help.

I did not like the sauna and did not find RIFE helpful but didn't use it for very long. I have heard very good things about hyperbaric for neurologic symptoms but have not done it. Good luck- do not give up this is treatable- I firmly believe that. Maybe you are due for a 2nd opinion.

Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 3/10/2009 7:29 PM (GMT -7)   
pcpc said...
Yes I have reasons to believe that it helps to treat Lyme in the cysted forms. It made a huge difference in my health when I was only mildly symptomatic with borderline serology and i have maintained Una de Gato throughout my treatment with antibioitics and have done very well. Well as well as one can do with this disease (see above)!

Here is a link to some information http://www.digitalnaturopath.com/data/cats_claw_controversy.html

and here are some references:

Falkiewicz, B. and Lukasiak, J. Vilcacora [Uncaria tomentosa (Willd.) D.C. and Uncaria guianensis (Aublet) Gmell.] a review of published scientific literature. Case Rep Clin Pract Rev 2001, 2:305-16.

Reinhard, K-H. Uncaria tomentosa (Willd.) D.C.: cat's claw, Una de Gato, or Saventaro. J Alt Comp Med 1999, 5:143-51.

Keplinger, K. et al. Uncaria tomentosa (Willd.) D.C. Ethnomedical use and new pharmacological, toxicological and botanical results. J Ethnopharmacol 1999, 64:23-34.

Rowen, R. The incredible healing action of one simple herb. Dr. Robert Jay Rowen s Second Opinion 2003, 12(12). www.samento.com.ec/sciencelib/sabstracts/secondopinion.html.


Great, thanks very much for the input. I have a pound of Cat's Claw with which I started brewing decoctions about a month ago, but was unsure of many times a day to drink it or to take it with/without food for best results. If you don't mind sharing, what's your Cat's Claw protocol?

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 3/11/2009 7:37 AM (GMT -7)   
You need to use a Peruvian CAt's Claw because it does not contain TOA- a substance that can counteract CNS benefits (see link above). I use either Samento or Allergy Research Prima Una de Gato. You will Herx with it so proceed slowly.

If using drops, 1 or 2 drops /day and then you can increase every 2-3 days as you see what it does with you. maximum that I have used is 15 drops twice daily. When I was on maintenance, just to treat asymptomatic cysts, i was told to hold it if I developed a cold/flu. You may notice that when ill with Lyme/Coinfections you do not get colds- I was told this is because the immune system is so weak it will not respond to common colds- a benefit. Ii wonder if others have observed this?

With Allergy Research capsules I use 2 3X/day, away from food, and as I improve, I am taking it one 2 capsules, 2 twice daily morning and night. I also use Allergy Research Argentyn 23. It is expensive but I was also told it treats L forms and controls yeast. You should not use high dose colloidal silver chronically but the Argentyn is very small particles and is okay for long term immune support. I use this in patients who are exposed to tick bites for 2 months (with doxycycline and Artemesin). It makes no sense to me to treat a tick bite with doxycycline alone.

kendal122
Veteran Member


Date Joined May 2007
Total Posts : 1088
   Posted 3/11/2009 11:20 AM (GMT -7)   
pcpc, what is your feelings on cd-57 do you believe in this?

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 3/11/2009 5:15 PM (GMT -7)   
Yes I it has some uses. i understand that it primarily refllects Lyme activity and if it remains low relapse is likely if antibioitcs for Lyme are withdrawn. Mine has been in the 20's since reinfection- but as I have improved so i actually retested it last week. It does not rise gradually, just one day as Lyme activity improves, it can rise. Many people are very sick with normal CD57's-- I think because they have coinfections/virusses keeping them down- but not much Lyme in the blood. That's my take on it- will let you know if mine comes up-- i will probably not go off lyme antibioitcs until it is over 60. That is how I am using it.

kendal122
Veteran Member


Date Joined May 2007
Total Posts : 1088
   Posted 3/12/2009 2:35 AM (GMT -7)   
pcpc, Thanks for the reply   -:)

kendal122
Veteran Member


Date Joined May 2007
Total Posts : 1088
   Posted 3/12/2009 12:42 PM (GMT -7)   
Pcpc, my last remaining symptoms are achy neck,both inner thighs are sore or achy. middle of back more to the left shoulder blade. and some time the pelvic area. what are thoughts on what this may be lyme, bart, babs? Thanks, -:)

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 3/12/2009 6:11 PM (GMT -7)   
My LLMD told me today that grapefruit seed extract kills the cyst form. I remember reading this in Cure Unknown also. I believe it is the only "herb" she mentions in her book. The LLMD is giving me plaqenil for the cyst form and he says grapefruit seed extract, which he gave me to kill yeast, will boost the effectiveness of the plaq.

Shelly71
Regular Member


Date Joined Sep 2013
Total Posts : 373
   Posted 2/19/2014 8:53 PM (GMT -7)   
Excellent info here
My unknown future is in the hands of an all knowing God.
Abnormal is my new norm.
**********************
5/13 Quest showed 1 band positive. #41 only!
9/13 IgeneX showed 6 bands positive.
11/13 Blood Smear showed Babs & Bart
Vitamin A deficient.


Meds: flagyl, ceftin, curcumin, vitamins
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