Lyme remission and doubts

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Regular Member

Date Joined Aug 2006
Total Posts : 293
   Posted 5/19/2009 7:00 AM (GMT -7)   
You could say that I was in remission for a year.  Some symptoms started back like tingling, headache, neck and back pain and muscle spasm.  I have started treatment again but wonder if I should just take supplements instead and see how it goes.  Lyme is just so confusing.  Your thoughts?

Regular Member

Date Joined Oct 2008
Total Posts : 99
   Posted 5/19/2009 2:19 PM (GMT -7)   
The Lyme bacteria goes into a cyst stage. My understanding is that it can come back at any time. I am nearly symptom free after ten month of antibiotics. As for me - I plan to stay on herbal and natural meds for a long while that will attack the cysts.
9/28/08 - 11/8/08 100mg Doxy b.i.d. 42 days
11/5/08 - 11/20/08 Salt/C, grapefruit seed extract, COQ10, omega 3.
11/20/08 -> reduced Salt/C, omega 3, Acidolphilus and Saccharomyces, low carb, no wheat, no alcohol, no yeast, no caffeine, no sugar.
Ceftin 500mg, 2x per day; Plaquenil 200mg, 2x per day; Mepron 750mg, 2x per day; Zithromax 500mg, 1x per day.

3/26/09 - Doxy. 200mg 4x, Plaquennil 200mg 2X, Clarithromycin 500mg X2
Acidolphilus and Saccharomyces, anti-inflammatory herbs with cat's claw & omega 3.
Low carb, no wheat, no alcohol, no yeast, no caffeine, no sugar.

Veteran Member

Date Joined Nov 2008
Total Posts : 759
   Posted 5/19/2009 6:30 PM (GMT -7)

Click this on B12. Amazing how your symptoms kind of mirror B12 deficiency. Go to the vita store and get a bottle of sub-lingual B12.

Try it for a week before going back to the expen$ive LLMds and their expen$ive and arduous ABX treatments.
Bit June 08. Treated with 10 days of doxy 200 mgs.

Issues in Aug. Retreated in Sept. 08. Six weeks doxy 200 mgs.

Add Biaxin for six months.

Stopped all treatment for six weeks.

Still on doxy 200 mgs after another recent rash!

Doing okay but want to make sure I rid myself of it or any remaining stuff.

Regular Member

Date Joined Jul 2007
Total Posts : 296
   Posted 5/19/2009 9:10 PM (GMT -7)   
It can take 3-6 months for the damage done by a lack of b12 to resolve itself with supplements.

Regular Member

Date Joined Oct 2008
Total Posts : 222
   Posted 5/19/2009 11:12 PM (GMT -7)   
I would be nervous if I was you too. I had gotten so much better and then I got the Flu in 2008 and bamb.. I lost a good 5 years out of 9 years of being sick. I am now still trying to get back to that place where I started to think i was making good progress. I was not well but I was far from what i am now. i am bumbed.

I would think hard about it. I was doing really nothing. I had been wanting to take nothing so i stopped a lot of things and was happy about it. Maybe now I would do it diferently?

Veteran Member

Date Joined Feb 2003
Total Posts : 9208
   Posted 5/20/2009 5:43 AM (GMT -7)   

Hi momtothree.  Have you recently been tested for the co-infections?

Some doctors treat with both traditional and alternative protocols.  If you want to do this combination or go the alternative route, I highly recommend doing so under doctor supervision.  Treating tick-borne diseases is complicated and should be managed by someone knowledgeable.

Regular Member

Date Joined Aug 2006
Total Posts : 293
   Posted 5/20/2009 5:48 AM (GMT -7)   
I was tested in 2006 for lyme and all co infections.  At that time, I was diagnosed with Lyme only.  This time, I was tested for Lyme and Erlichia, but not bartonella or babs.  My LLMD does not feel that the test for bart is accurate.  I will get the results on June 2. 

Turquoise Sky
Regular Member

Date Joined Apr 2009
Total Posts : 250
   Posted 5/20/2009 7:49 AM (GMT -7)   
My thought is that it is best to keep on whatever it takes to keep your immune system as strong as you can because if all we can hope is to keep the critters dormant, I plan to keep them there as long as I can! Maybe they can be eradicated, and maybe not, but I am not leaving it to chance any longer!

Veteran Member

Date Joined Dec 2005
Total Posts : 1336
   Posted 5/20/2009 8:20 AM (GMT -7)   
I too got 100% well. Would have called myself cured. After treatment for 2 1/2 years and being sick for almost 5 years I battled very hard to get well and I eventually did. After stopping abx I was an avid exerciser. I worked out daily, ran, joined a gym, got a personal trainer and was to the point of working out 10 hours or more a week. I stayed this well for over 3 years. I met someone, fell madly in love and made the mistake of spending more time with him than in the gym and slowly my symptoms began to return. I am still with him and we have a beautiful child together, but if I could go back, I never would have stopped the exercise. I believe it is what allowed my lyme to return and I have been working on getting back to that 100% again for a while. I wouldn't say I am horrible (most of the time I am ok), but I have my flare ups and I know that I still have to battle this illness and that is why I never say "cured" as I tested clean once I got well and the lyme was still in there hiding and just waiting for the right time to rear its ugly head.

Veteran Member

Date Joined Feb 2008
Total Posts : 900
   Posted 5/20/2009 11:11 AM (GMT -7)   
I also have my doubt that I will ever be completely well. I have felt well before several times only to relapse. The fact is, I accept my new "normals" and do not realize that I really am not completely 100% especially concerning such things as mental clarity which can be confused with getting older.

I know that I flare (or herx) every 4 weeks around the full moon so I pay a lot of attention to what is happening around that time. If I have even one spasm or a headache I suspect it is lyme hidden and waiting.

I took levaquin and it was so toxic I cannot take any chemicals right now so I am using herbs. My right arm was almost useless from tendinitis (levaquin causes this - lyme is part of it) but is now getting better. It is very hard to tell what is causing what. I intend to take herbs for a long time but cut down the amount gradually.
I feel very well except for the arm pain.

I find books and sites like this are very helpful for treating myself. The closest LLMD is 500 miles away and I was not pleased with his treatment which cost me about 3K and left me practically disabled. The fact is his treatment plan is not geared toward me as an individual, it is one size fits all. He did not even do a physical examination of me. People my age are much more suceptable to the side effects of levaquin which he did not consider. If I want to use abx again, I know what is used for what and where to order them online. I am sticking to the herbs.

If you invest in books, you can diagnose yourself. I diagnosed myself with lyme and bartonella and the doctors just confirmed it. If you take herbs, it is not cheap and cannot be deducted from your taxes - insurance of course won't pay for it. I think that is why most doctors take the abx route thinking it will be quicker and cheaper for the patient plus they are married to the pharmacy. I believe you need abx when you are really sick to get the disease under control but after that it is better to use herbs. If you continue to take chemicals you get yeast which just weakens your immune system. Herbs strenthen the immune system. You can also get very toxic from the chemicals such as in my case. The effects of Levequin can last for years. The crap is stored in your body.

New Member

Date Joined May 2009
Total Posts : 7
   Posted 5/21/2009 8:27 AM (GMT -7)   


      I am new to this forum, but have been in another one.  I was diagnosed with Lyme in 11-09.  I have been told it is Chronic Lyme and that I have had it for some time.  My dr. put me on doxy 2x a day for 90 days.  I thought I was getting better.

    I had a strange epsiode about 2 weeks ago.  I woke up one morning, b4 the alarm and thought the bed was shaking. I found out it was me, but only I could feel it. My dear hubby touched me and couldn't feel it.  Next my right arm started shaking, feeling weak and then my whole body felt really weak, weird, indescribable. It scared me and I called and made an appt with my dr.  I almost caved and went to the ER, because I couldn't figure out what was happening.

  I went to the appt.  Dr. send me for CT scan of brain, thinking stroke. It was fine.  She had me wear 24 hour Halter Monitor.  Heart is normal.  I started reading on line and doing some research and it sounds like everything that I felt that day and for the next 6-7 days  was just symptoms of Lyme.  I also have a lot of headaches and they almost always start in my neck and I have back pain also, including joint pains that move from one joint to the next , days when I come home from work and go straight to bed and not wake up til the next morning.  I also have a problem with smelling what smells like cigarette smoke, and no one around me smoking. It drives me nuts.  I had problems with it and then it went away for a while and now it is back again.  Anyone else have "phantom" smells?

  Has anyone else had an episode like mine or have had problems with your arm shaking and trembling? 

Thanks for listening and hope to hear that I am not alone.


Regular Member

Date Joined Aug 2006
Total Posts : 293
   Posted 5/21/2009 8:35 AM (GMT -7)   
Oh katiebugok, I have the trembling in the arm as well as the smells.  My hand started to tremor and it started going up my arm.  I had to control this movement with my other arm.  My sense of smell has greatly heightened and I smell things that others don't. I have severe back pain, makes walking difficult after 20 minutes or so, and my legs feel weak as if I am going to fall down. 

New Member

Date Joined May 2009
Total Posts : 7
   Posted 5/21/2009 8:42 AM (GMT -7)   
Oh wow... I am NOT nuts. My arm has calmed down a bit now. I started wearing a wrist splint. My back will start, what I call, feeling tired, if I am standing for a while and feels like back is going to snap and my legs will collapse. I am 48 and know that I am too "young" to be feeling this way. The smells things just about makes me crazy.
Thanks so much for replying and letting me know I am not crazy. I am going back to my dr. armed with the info I have found and talk with her. I am trying to work, but just don't know how much longer my employer is going to tolerate the days when I can't cope and function. The brain fog is sooo much fun too.
Thanks for sharing!

New Member

Date Joined May 2009
Total Posts : 7
   Posted 5/21/2009 2:05 PM (GMT -7)   
I just wonder how long I have really had this DD. I look back on the symptoms and have had a lot of them off and on for a long time. I just thought and had been told they were after effects of Rheumatic Fever I had as a kid. I've had joint pains, palpatations, migraines, fatigue, depression, etc, for about 20 years.

Veteran Member

Date Joined Sep 2007
Total Posts : 2017
   Posted 5/21/2009 3:12 PM (GMT -7)   
katiebugOK said...
Oh wow... I am NOT nuts. My arm has calmed down a bit now. I started wearing a wrist splint.
I am 48 and know that I am too "young" to be feeling this way. The smells things just about makes me crazy.
You are NOT nuts.  During my ongoing battle with LD, I have worn carpal tunnel braces.  I am only 44, I've been going through this since I was 35.  The thing that gets me is that I was so darned healthy and on the go at age 35 that I still can't reconcile my illness with my "prior" life..... when I finally "come to" I expect to think I'm "35" - it's like time has stood still for me, I want MY LIFE back so bad!  I also have the hyper-sensitve sense of smell, hearing, etc.

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", song

Veteran Member

Date Joined Aug 2007
Total Posts : 4399
   Posted 5/21/2009 3:44 PM (GMT -7)   

Anything purchased over-the-counter for health/medical purposes is tax deductable EXCEPT over-the-counter medications (such as tylenol, benadryl, etc.). Herbs, vitamin supplements, even band-aids are tax-deductable medical expenses. Even travel expenses related to doctor visits can be deducted ($50/night hotel, mileage driven in your own car, airfare, rental car fees, etc.).
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.

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