Lymes

[Sydnie]

Hi All

Does anyone ever eradicate their Lymes disease…any of the success testemonials Ive read dont really mention having Lymes.  I know I had my Lymes was  in abayance for 3 years.  I dont know how I did it but using only Mino MWF, ( not knowing I had Lymes) and diet and excersize. In that time tho I had been hospitalised twice and had IV antibiotics….I think this helped.

Anyway Im now back at square one..a lot of symptoms are back…..have a LLMD doc appt here in UK tommorrow but having to cancel as ,my husband is thouroughly unconvinced and as my GP has tested for Lymes he wants to await these results before proceeding further-which I fully understand-although I know their tests will come back negative…

Ive booked for a treatment of IV's which hopefu;lly will hold things at bay for a while until I get to see the LLMD-hopefully in DEcember. 

This will be my first round of IV's – any advice???

Would love any advice..

SX

[lynnie_sydney]

Sydnie – this is one of the testimonials from our main site – Kim's story of how she treated her SD with AP, then tested and began treating for Lyme Disease after plateauing. Lynnie https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/502.html

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[nspiker]

Sydnie,

Please reconsider not canceling your LLMD appointment :blush:.  Believe me, there are many who have a difficult time convincing family, husbands, doctors or themselves that they have lyme.  Time and treatment is the best predictor of success. 

I was resistant to thinking it could be lyme; had been tested for lyme five times in the past, and it was always negative.  My LLMD convinced me to start treating toxoplasmosis first, which can act like lyme.  I improved some.  We then moved on to treating babesia, and have improved 70%.  Thankfully, I put one foot in front of the other and got treatment, even when I didn't believe. 

I had an appt. with my LLMD yesterday, and she said the only way to know what works is how the patient responds.  You will not know what works until you begin treatment.  Keep your appointment and get another opinion on your symptoms.  You don't have to move forward unless you are comfortable with the protocol and the process. 

Hopefully others will chime in who had difficulty convincing family that they have lyme…hopefulmama?

nancy

[Sydnie]

Hi Nancy

Thank you for your concern but at this point I have no alternative.  I dont want to annoy my husband as Im back here after 3 years of wellness….he has agreed to IV treatment so Im gonna go along that route and mebbe things will fall back in place.  Ive made another appt for DEc …hopefully I can amke that one…Im feeling really bad…so scared cause last time I was here I got really really bad depression…

Is it possible that the antiobiotics IV I got in hospital put the Lymes underground and my immune system ,was coping with it for 3 years,,,do u think the IV might knock things back into shape?? Im not at the bad stage I was last time yet??

Thanks

Sx

[Trudi]

[user=289]Sydnie[/user] wrote:

Is it possible that the antiobiotics IV I got in hospital put the Lymes underground and my immune system ,was coping with it for 3 years,,,do u think the IV might knock things back into shape??

Sydnie–

Absolutely to your first question.  Can't see why not to your second.  You might want to analyze your life now compared to three years ago as to what is different that may be keeping your immune system unable to cope.  Stress is the first that comes to mind.  Medicine, food, travel, another bite, etc. are other possiblities.

Good luck,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Michele]

Hi Syndie,

I also hope you reconsider keeping your appointment with your LLMD. I'm sorry to hear your husband wants to wait for your other tests. I hope he will reconsider.

Since you are responding to antibiotics, it appears highly likely that your illness is infectious in nature. Being in the care of a knowledgeable Lyme doc has helped me so much. She has targeted the infections and matched the antibiotics that work best for my infectious “pea soup.”

Hang in there!

Michele

[nspiker]

Sydnie wrote:

Is it possible that the antiobiotics IV I got in hospital put the Lymes underground and my immune system ,was coping with it for 3 years,,,do u think the IV might knock things back into shape?? Im not at the bad stage I was last time yet??

I'd bet on it.  That's actually a really good sign that your immune system held it in check for three years. 

What IV's has your doctor agreed to, and for how long? 
nancy

[Sydnie]

Hi Nancy

Thats so heartening Thank you

Its DR Browns protocal…Small then increased 3 doses over 5 days…Start on Monday…just need to keep things in check til then eh? 

Any thoughts

SX

[Valsmum]

I'm learning more and more anout lyme mostly from the posts at RBFBB. Are the CPR and Sed rate/ESR given to those who have lymw? Are they as high as those who have lyme? If I herx after taking minocycline and my labs prove I'm having a herx reaction, would the labs look the same if I had Lyme?

 

Thanks, Valsmum

[hopefulmama]

Hi Sydnie,

Sorry for taking so long to chime in.  My husband is much like yours and he still has a lot of trouble accepting the lyme diagnosis, but I have to say that once my co-infection tests came back as positive for babesia, he started believing a lot more.

I understand what you are wondering, if anyone is ever really “cured” from lyme.  So far I haven't found a single testimonial on the web of someone who has actually been cured.  One of my two LLMDs told me that they never tell patients they are cured, they tell them that they have gone into remission. 

My sense with lyme is that there are a lot of other factors that put a body out of balance and allow their particular mix of bacteria to get out of control.  E.g. hormonal imbalance, heavy metals, candida, stress, poor diet, etc.  I look upon my LLMD/ND as my “balance” doctor and already some of the results are really encouraging.  For example, we found out that my progesterone was extremely low – way out of range, as though I was in menopause even though I am only 34.  Now that I am supplementing the progesterone, several of my most uncomfortable symptoms are dissipating. 

I hope that ultimately you will be able to see a LLMD.  I have come to the point where I believe they are some of the best physicians in the world because they look at a patient holistically and really examine the overall picture, rather than only treating a specialty or specific set of symptoms.

Best wishes and also best of luck with your husband.  Believe me, I understand.  Been there 🙂

Warmly,
Andrea

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